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People Who "bailed" When You Were Sick/crippled With Pain?


IrishHeart

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IrishHeart Veteran

I have a "dilemma" and hub says "ask the people on the forum--they knew all the other answers to your questions!" :)

I am very blessed to have a loving husband who never once gave up on me when I was very ill and nearly incapacitated for over 3 years. He took me to dozens of doctors, physical therapists, specialists, etc. and read hundreds of internet articles with me as we searched for what had struck me down. During this time, a few "best" friends and family members started to "drift away" as I was the one who would arrange parties, gatherings, dinners out or my "famous" 8-course gourmet tastings. :blink: (this was my passion and I had to give it up) :(

I am a very understanding person and I know everyone has their own lives to lead, yet

I am a bit stunned by the actions of those who I thought would be more supportive or encouraging. I worked tirelessly to get well and properly diagnosed, but because it took so long, I think people just gave up on me. :o I had to miss some reunions, weddings and such--- and it killed me to do that! It just could not be helped, the state I was in. I had to travel many hours to attend a funeral even though I could barely sit without agony--because I felt it was the right thing to do.

All this time, I kept emailing, corresponding, calling--as best I could--and sending birthday cards,etc.... we even kept up our Christmas gift-giving to the little ones in the family (even when my brain was so foggy) I even made myself attend things (kids' soccer games, Thanksgiving, etc) as best I could so I could see those I love. I was an emaciated, painful mess, but I wanted to try and live as normally as possible and not disappoint those who wanted me to "be there". I never complained to them (much :) )and just put on "game face".

Yet, some people have not called to see how I am doing. NONE of those who live close by have ever visited me. One person is actually "mad" at me for getting ill and not getting well fast enough and hasn't spoken to me in months. :blink: Few have let me know they are glad I finally got a diagnosis . No real encouragement from many of the people I know. I DO have a few good friends who remain loyal and loving--- but they live far away. Thank God for skype :lol:

My large family was informed of the genetic testing results and out of 50+ relatives, 2 have called me. Now, many of you WARNED me this would happen --no one wants to hear about celiac--but I felt it was important to tell them of the genetic test results. They are all a mess of GI issues,depression, and autoimmune disease. (and two have been tested for it so far--one DXed for sure) My mother said the material I sent was great and she found it very helpful and she was proud of me for doing it. (gee, what 54 year old doesn't love to hear her Mom is proud of her?? :D LOLLOL)but of course, I did it out of concern and love.

Honestly, I am hurt. I shouldn't complain as I know some of you had spouses/SOs bail on you and my loss is minimal. I have talked with so many of you who went through the same thing and I feel bad it happened to you.

I guess I just do not understand how anyone COULD bail. When anyone I know has been seriously ill, bailing is the LAST thing I did!

Hub says "Sorry, babe, but people don't love ya when you're down and out" (he is more of a realist, perhaps)...but I don't want to believe that people are that shallow. I make every allowance for human nature and "busy schedules" of course. But how long does it take to make a phone call?? :blink:

Anyone else have this experience and can you offer me any solace/advice? I did not mean to sound like a "pity party"--gosh, no--I have many blessings and I am grateful, believe me!! ...I am just a bit hurt. (I'll get over it-- I am sure! :) ) Just find it baffling. :blink:

Thanks, guys--most of you have been more encouraging and supportive than those I have known my whole life. Maybe you just "get it" and they do not??

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ravenwoodglass Mentor

I wish I had some advice for you but I can definately identify with what has happened. By the time I was well I had lost all friends and even family leaves me as the odd man out. It isn't like we did something 'wrong' that we deserve to be punished for but at times that is what it feels like.

Perhaps once you are feeling better you can start doing some of those dinners you did so well before. You don't even have to tell folks they are gluten free just send out invites and hopefully in time your friends will be filling your house once again. If they don't it will be their loss.

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mushroom Proficient
Maybe you just "get it" and they do not??

I really think it boils down to this in most cases. Although there are those who do not wish to deal with anyone who inconveniences their "pat" little lives where they will have to make allowances and change some habits in their interaction with you. And who can't be bothered if you are not going to continue to cook glutenous gourmet meals for them :o .... Who don't wish to make any accommodations for people whose needs and lifestyles have suddenly had to change. You just have to let them go because you know that at any crunch time they would not have been there for you anyway :rolleyes: It hurts at first but that's the way it is. Maybe we have even done it ourselves unknowingly on some level :unsure: While we hope not, I can't say for sure that there are not friends from whom I have drifted away who had some problem they would have preferred I be more understanding about :(

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Salax Contributor

I get it.

First, hats off to Hubby. It really is a blessing when your spouse or partner stands by you and loves you no matter what. But others don't always.

I had a friend since I was 8 years old (I am 32 now), but we were tight and sometimes I think my lack of a diagnosis got in the way of our friendship. Sometimes. Then I think I came to realize, during one of my friends events that we really weren't friends anymore and she was a very selfish person and had been for most of our relationship. I just chose to ignore it for many years. I was giving, she was always taking. I bear her no ill-will, but I don't need people like that in my life. She is entitled to behavior whichever way she chooses. I choose not to be friends with her.

I guess my point is that whatever the reason, there are people that we outgrow, don't mesh with or aren't on the same road during our lives. And if the illness that we have allows us to see that, then all the better. I even remember my oldest sister thought I was faking it for years, until I had that diagnosis. Then she felt bad, even still to this day I think she has guilt over not believing me.

There are new relationships to be made. I actually have a friend that I have known for 4 years now that is the most loving, giving person. Who ironically went through a bad bout of a mysterious illness as well, and it was nice to be there for someone as a friend. Especially since I never had that from mine.

Try not to take it personal, maybe just maybe they are feeling guilt or even afriad to approach you. Either way, your ok. Thats what is important. B)

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kwylee Apprentice

Hub says "Sorry, babe, but people don't love ya when you're down and out" (he is more of a realist, perhaps)...but I don't want to believe that people are that shallow.

I agree with your husband but with a couple words extra: WEAK, FEARFUL people don't love ya when you're down and out. Seems like some humans are afraid for whatever reason to approach you when you are ill or in difficult circumstances, (with the exception of the one whose approach is to stop speaking to you because you weren't well - not sure what to make of that ridiculousness) - But the others perhaps just don't know what they'll say, or are afraid you'll ask them for something, or here's the biggest thing: perhaps they just don't want to have to face that this could mean the same for them, since it appears they're in your family.

In any event, as hard as it may be right now, I'd let it go - turn the page and move on. You did the right thing by planting the seed, by speaking up and letting them know something important that may help them in the future.

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Mummyto3 Contributor

All I can say is, good riddance to them! You don't need people like them in your life. At least now you know who you can count on when you need them :D Although its my daughter who's been diagnosed (my test was done today), my friend has been amazing. Her son has medical problems too, so she understands what I'm going through and what it's like to have a child with problems, dr appointments and time off school etc. I haven't had anyone 'run away' as yet. I think thats awful. I know I wouldn't do that to somebody :o

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glutenfreegirl Enthusiast

My heart goes out to you..as I have been there too lost family and friends ...but I had to change my thought to it is their loss!! None of my family took it serious and have all chosen not to get tested even though they all have symptoms even my one niece has struggled since birth...she is soooo obvious celiac...but again oh well after yrs of trying to help them I have to just help myself and my kids now ...I know it hurts and it will always hurt...family should never turn their back.....But we here can be your family.... :D Big hugs.....

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love2travel Mentor

Irish, our husbands must be brothers! Mine dotes on me as well. The last 3 1/2 years have been very difficult living with chronic pain. I went through guilty feelings of holding my husband back from doing things he loves and so on. We had to cancel so many plans because I did (and still do) live according to how my back was/is that particular day. Plus my husband works about 70-80 hours per week at a highly stressful job. Sometimes when he comes home he must do the laundry, cook and clean because I have not been able to do it myself (when I have all kinds of time on my hands). I remember asking him awhile ago whether he loved me any less because of it and he lifted up my chin and said, "I love you now more than ever. I admire your steadfastness and perseverance so do not ever think I could love you any less." It really stood out in my mind because I have felt like half a person at times and at my young age a hindrance. Now that I am in a better place I realize that I give, too, and do what I can. My husband is my rock and constantly edifies me and reassures me that I am so valuable (and I know that I am!).

My family is the same. They all rally around me and are so supportive of all my health issues. My Mom calls me daily to see how I am. When we get together everyone is absolutely stringent on CC, gluten-free food and so on, even keeping labels of things to ensure there is no gluten. Most of my friends are the same, too, but there are admittedly a few people I am very surprised that have not contacted me in about two years. I realize people have their lives but at times I feel left out because of my diet/pain restrictions. In fact, a "friend" had a baby and I did not even know about it until two weeks after the fact! I could have been checking up on her more than I did, too, but still.

Some people do "get" it; most do not. It seems like those without health problems have no concept of pain and can be downright heartless. Those who have suffered seem to be far more empathetic and sympathetic. Pain has really taught me a lot, too. I have always been compassionate (to a fault at times) but am now more so than ever. Now when I stop at a busy intersection and see a woman shuffling across the street I do not wonder whether she has been drinking but feel bad because she may be in pain. Maybe she has just been glutened! I see things differently.

A few acquaintances may see me in out and about and say, "Wow! You look good today. Your back must be better." Often I am in so much pain and do not show it and yet I do not want to take ten minutes to explain that whole chronic pain thing. One woman I know goes horseback riding frequently and she says she is shocked I cannot do more than I do as "...we have the same kind of pain...". She wonders how I can possibly go on a trip to Europe when I cannot even attend a BBQ. I get that BUT she does not understand that I must pick and choose what to do on that particular day. I must prioritize especially if I have an appointment or cooking class the next day. Know what I mean?

So, I hold on tight to those who do support and love me unconditionally. My core group really matter and are a good example of what love and compassion should be. My Mom has cried many tears while holding me and hurts so deeply for me. That is true love and I am incredibly and amazingly blessed to have her, my family and my precious husband whom I adore to bits. :)

Hold fast to that amazing husband of yours. Be assured of his love and commitment towards you. Hope you experience joy in that sweet heart of yours today!!

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GlutenFreeManna Rising Star

I went through something similiar except that in my case I wasn't able to keep sending cards and attending things. I hardly knew what day it was sometimes. It was a big eye opener for me when people I had known for over 10 years (I'm 31 so that is a large chunk of my adult life) stopped calling me or asking how I was doing. Even worse, was one time when I was undergoing neurological testing while my husband had to go out of town for work. I was not supposed to drive under doctors orders because of unexplained seizures. The appointment had taken months to get and if I canceled it would have been another 6 months before they could get me in. I asked several people that had been there in the past for a ride to the dr. These were not people working full time--they were mostly part time, retired or students that had flexible schedules. The person that agreed to take me ended up being someone I had only known a few months. My long time friends had bailed and didn't even return my call or call later to ask how the tests went. It really hurt for a long time. But I have moved on and I'm trying to make new friends now. A lot of the people that are my newer friends have also had/have chronic illnesses and they can relate. Most of them I probably would not have become so close to if it were not for my own illness. I did reach out again to a few people that bailed when I was at my worst. Some of them came back into my life and at least one apologized to me saying she had no idea I was that serious. Many people don't realize it because we don't always look sick. And in your case if you still kept up with most of the correspondence while sick then your friends had no sign that anythign was wrong. Of course in my case droppign everythign I found out most people just took it as a sign that I didn't care because I didn't remmember their birthday. My own mother really hurt me by giving me a "birthday calendar" and several packs of birthday cards so I wouldn't forget or have an excuse for not sending them. I broke down in tears over that because I had been so sick I couldn't get out of bed most days, didn't know what day it was because I was losign my memory, and and she was chiding me about not sending cards instead of asking me if anything was wrong.

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Harpgirl Explorer

Aww! Poor Irishheart! :( Definitely cling to your husband! My family all live quite a distance, but I'm fortunate enough to belong to a close knit church group.

But I can relate to what your going through because of my dad. My parents moved to a small town in North Carolina and living out in the middle of the woods, they've tried to make good friends with their neighbors. My mom really enjoyed the company of a particular couple, but my dad is manic/depressive... He went through a manic phase once, and when he is like that, he says very irrational things. He never apologizes for anything he says when he's in any state (I think that's a trait of the condition), and apparently, he highly offended this couple. My mom tried to explain things to them, but they are the sort that can understand a broken arm or the flu, but can't grasp a chemical imbalance. It took them a while to warm back up to her, but they still won't have anything to do with my dad.

Some people simply have zero sympathy or empathy. My advice would be to let them go and gather those who comfort you whether they be on-line or new understanding comrads. :D

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Harpgirl Explorer

I went through something similiar except that in my case I wasn't able to keep sending cards and attending things. I hardly knew what day it was sometimes. It was a big eye opener for me when people I had known for over 10 years (I'm 31 so that is a large chunk of my adult life) stopped calling me or asking how I was doing. Even worse, was one time when I was undergoing neurological testing while my husband had to go out of town for work. I was not supposed to drive under doctors orders because of unexplained seizures. The appointment had taken months to get and if I canceled it would have been another 6 months before they could get me in. I asked several people that had been there in the past for a ride to the dr. These were not people working full time--they were mostly part time, retired or students that had flexible schedules. The person that agreed to take me ended up being someone I had only known a few months. My long time friends had bailed and didn't even return my call or call later to ask how the tests went. It really hurt for a long time. But I have moved on and I'm trying to make new friends now. A lot of the people that are my newer friends have also had/have chronic illnesses and they can relate. Most of them I probably would not have become so close to if it were not for my own illness. I did reach out again to a few people that bailed when I was at my worst. Some of them came back into my life and at least one apologized to me saying she had no idea I was that serious. Many people don't realize it because we don't always look sick. And in your case if you still kept up with most of the correspondence while sick then your friends had no sign that anythign was wrong. Of course in my case droppign everythign I found out most people just took it as a sign that I didn't care because I didn't remmember their birthday. My own mother really hurt me by giving me a "birthday calendar" and several packs of birthday cards so I wouldn't forget or have an excuse for not sending them. I broke down in tears over that because I had been so sick I couldn't get out of bed most days, didn't know what day it was because I was losign my memory, and and she was chiding me about not sending cards instead of asking me if anything was wrong.

There is a running joke in my family about me forgetting to send birthday (or Mother's Day, Father's Day, etc.)cards. They know I struggle just to remember to call. Sometimes I'll surprise them (and myself) when I remember to call. But inevitably, if it's someone's birthday, I'll get a call too as a reminder to call them. :P

And as far as not remembering what the day is, last St. Patrick's Day I was going to put on a cute "kiss me I'm Irish" shirt on my one year old. Well the day came unbeknownst to me and he wasn't wearing the cute shirt along with the other little cuties in green! I was so frustrated and disappointed in myself! I know it doesn't seem like a big deal, "Yeah, so what? So he didn't wear a green shirt." But it was so frustrating because it was something I had made a particular mental note of, and still I couldn't remember!

Hopefully, when I'm squared away gluten-wise, I won't have that issue so much.

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luvs2eat Collaborator

Ya know when they'll "get it?" When something devastating happens to them. That's when the clueless realize that they weren't there for their friend and they'll feel terrible.

A similar thing happened to my youngest DD who's spent the last few years dealing w/ extreme food intolerances. She was the party house... loving to bake and cook and entertain... and turned into a sick little girl who could eat about 10 foods and had to be so careful, she couldn't even BE IN the restaurant where all her dodge ball team went for nachos after a game. She lost tons of weight, she and her fiance broke up and ALL of their friends simply disappeared! She was devastated. She finally talked to some of the friends and told them how hurt she was, but it'll never be the same.

I have another "forum" friend who's fairly young husband (40s) had a catastrophic stroke. She's been hurt just like you describe as all their friends slowly drifted away.

Like I said... they'll get it when something awful happens to them... NOT that I'd want anything bad to happen to anyone!! But it's THEN that they'll realize!

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IrishHeart Veteran

I wish I had some advice for you but I can definately identify with what has happened. By the time I was well I had lost all friends and even family leaves me as the odd man out. It isn't like we did something 'wrong' that we deserve to be punished for but at times that is what it feels like.

Perhaps once you are feeling better you can start doing some of those dinners you did so well before. You don't even have to tell folks they are gluten free just send out invites and hopefully in time your friends will be filling your house once again. If they don't it will be their loss.

thanks, Raven...since day 1, you have given me good advice and encouragement --and I appreciate you so much!

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IrishHeart Veteran

I really think it boils down to this in most cases. Although there are those who do not wish to deal with anyone who inconveniences their "pat" little lives where they will have to make allowances and change some habits in their interaction with you. And who can't be bothered if you are not going to continue to cook glutenous gourmet meals for them :o .... Who don't wish to make any accommodations for people whose needs and lifestyles have suddenly had to change. You just have to let them go because you know that at any crunch time they would not have been there for you anyway :rolleyes: It hurts at first but that's the way it is. Maybe we have even done it ourselves unknowingly on some level :unsure: While we hope not, I can't say for sure that there are not friends from whom I have drifted away who had some problem they would have preferred I be more understanding about :(

Bless you, "shroom--for always putting things into perspective for me. I have learned more about human nature --in times of adversity--than I cared to. I have always been the "mother hen"/shoulder to others and that may also explain things--I can't "be there" right now . Wise hub has said this all along--but I guess I was hoping that I'd get some "boosting" as well when I needed it. Not so, I'm afraid. ah well, never too old to learn a lesson. ;)

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IrishHeart Veteran

I get it.

First, hats off to Hubby. It really is a blessing when your spouse or partner stands by you and loves you no matter what. But others don't always.

I had a friend since I was 8 years old (I am 32 now), but we were tight and sometimes I think my lack of a diagnosis got in the way of our friendship. Sometimes. Then I think I came to realize, during one of my friends events that we really weren't friends anymore and she was a very selfish person and had been for most of our relationship. I just chose to ignore it for many years. I was giving, she was always taking. I bear her no ill-will, but I don't need people like that in my life. She is entitled to behavior whichever way she chooses. I choose not to be friends with her.

I guess my point is that whatever the reason, there are people that we outgrow, don't mesh with or aren't on the same road during our lives. And if the illness that we have allows us to see that, then all the better. I even remember my oldest sister thought I was faking it for years, until I had that diagnosis. Then she felt bad, even still to this day I think she has guilt over not believing me.

There are new relationships to be made. I actually have a friend that I have known for 4 years now that is the most loving, giving person. Who ironically went through a bad bout of a mysterious illness as well, and it was nice to be there for someone as a friend. Especially since I never had that from mine.

Try not to take it personal, maybe just maybe they are feeling guilt or even afriad to approach you. Either way, your ok. Thats what is important. B)

Thank you, you sweet--and very wise--- woman! ;) You're right. The irony of all this? I taught Interpersonal Communication courses for years and I always taught the students that if a relationship is "toxic" or too one-sided, it isn't healthy and perhaps they should terminate it if they are always the "giver". In a way, I learned valuable lessons about who will be there for me when the doo-doo hits the fan.

I thought I had already learned that lesson years ago when I went though a divorce. :blink: That was an eye-opener as well....talk about deserting the ship! Yikes!! :lol:

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IrishHeart Veteran

[KWYLEE quote name

Hub says "Sorry, babe, but people don't love ya when you're down and out" (he is more of a realist, perhaps)...but I don't want to believe that people are that shallow.

I agree with your husband but with a couple words extra: WEAK, FEARFUL people don't love ya when you're down and out. Seems like some humans are afraid for whatever reason to approach you when you are ill or in difficult circumstances, (with the exception of the one whose approach is to stop speaking to you because you weren't well - not sure what to make of that ridiculousness) - But the others perhaps just don't know what they'll say, or are afraid you'll ask them for something, or here's the biggest thing: perhaps they just don't want to have to face that this could mean the same for them, since it appears they're in your family.

In any event, as hard as it may be right now, I'd let it go - turn the page and move on. You did the right thing by planting the seed, by speaking up and letting them know something important that may help them in the future.

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IrishHeart Veteran

I know I wouldn't do that to somebody :o

Me neither, kiddo!!!--maybe that's why I feel so stunned .. :(

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IrishHeart Veteran

My heart goes out to you..as I have been there too lost family and friends ...but I had to change my thought to it is their loss!! None of my family took it serious and have all chosen not to get tested even though they all have symptoms even my one niece has struggled since birth...she is soooo obvious celiac...but again oh well after yrs of trying to help them I have to just help myself and my kids now ...I know it hurts and it will always hurt...family should never turn their back.....But we here can be your family.... :D Big hugs.....

Thanks dear GFgirl! Really appreciate the hugs and the wise and compassionate words! ;)

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IrishHeart Veteran

Irish, our husbands must be brothers! Mine dotes on me as well. The last 3 1/2 years have been very difficult living with chronic pain. I went through guilty feelings of holding my husband back from doing things he loves and so on. We had to cancel so many plans because I did (and still do) live according to how my back was/is that particular day. Plus my husband works about 70-80 hours per week at a highly stressful job. Sometimes when he comes home he must do the laundry, cook and clean because I have not been able to do it myself (when I have all kinds of time on my hands). I remember asking him awhile ago whether he loved me any less because of it and he lifted up my chin and said, "I love you now more than ever. I admire your steadfastness and perseverance so do not ever think I could love you any less." It really stood out in my mind because I have felt like half a person at times and at my young age a hindrance. Now that I am in a better place I realize that I give, too, and do what I can. My husband is my rock and constantly edifies me and reassures me that I am so valuable (and I know that I am!).

My family is the same. They all rally around me and are so supportive of all my health issues. My Mom calls me daily to see how I am. When we get together everyone is absolutely stringent on CC, gluten-free food and so on, even keeping labels of things to ensure there is no gluten. Most of my friends are the same, too, but there are admittedly a few people I am very surprised that have not contacted me in about two years. I realize people have their lives but at times I feel left out because of my diet/pain restrictions. In fact, a "friend" had a baby and I did not even know about it until two weeks after the fact! I could have been checking up on her more than I did, too, but still.

Some people do "get" it; most do not. It seems like those without health problems have no concept of pain and can be downright heartless. Those who have suffered seem to be far more empathetic and sympathetic. Pain has really taught me a lot, too. I have always been compassionate (to a fault at times) but am now more so than ever. Now when I stop at a busy intersection and see a woman shuffling across the street I do not wonder whether she has been drinking but feel bad because she may be in pain. Maybe she has just been glutened! I see things differently.

A few acquaintances may see me in out and about and say, "Wow! You look good today. Your back must be better." Often I am in so much pain and do not show it and yet I do not want to take ten minutes to explain that whole chronic pain thing. One woman I know goes horseback riding frequently and she says she is shocked I cannot do more than I do as "...we have the same kind of pain...". She wonders how I can possibly go on a trip to Europe when I cannot even attend a BBQ. I get that BUT she does not understand that I must pick and choose what to do on that particular day. I must prioritize especially if I have an appointment or cooking class the next day. Know what I mean?

So, I hold on tight to those who do support and love me unconditionally. My core group really matter and are a good example of what love and compassion should be. My Mom has cried many tears while holding me and hurts so deeply for me. That is true love and I am incredibly and amazingly blessed to have her, my family and my precious husband whom I adore to bits. :)

Hold fast to that amazing husband of yours. Be assured of his love and commitment towards you. Hope you experience joy in that sweet heart of yours today!!

Dear Love2--Most of what you say about your feelings regarding hubby mirrors mine. I felt I was "ruining' his life. He is 10 years older than I am and retired and we planned on traveling. Everything came to a screeching halt. One day, ill out of my head, I tearfully told him he could divorce me; I would understand. I didn't want him saddled with a sick wife. My big bear of a sweetheart said quietly-- "Don't ever say such a thing like that again--you're my girl. We'll get through this together." I could cry at the sweetness of that memory. He is my rock --I always say that too! :) I feel bad about the things we have missed, but he doesn't care. All he cares about is me getting well. (and I am slowly but steadily :) )

My struggle has been inexplicable; I was so ill and in excruciating joint/muscle and burning nerve pain, 24/7, unable to sleep, lie down, walk, sit...out of my mind with cognitive dysfunction, insomnia and anxiety and every day was hell. He has picked me up off the bathroom floor when I was so spent from bouts in there and held cold compresses on my head to soothe the migraines. he has done it all-- dressed me, massaged me, and bathed me. My poor Mum didn't know what to do for me--she lives 4 hours away and could only cry with me over the phone. I'm the STRONG one in the family! They all lean on me--and I'm the baby of the family. I took care of her and my Dad for years when he was ill and dying...then, this HIT me. Just a nightmare. I lost nearly 4 years of my life. No drugs help me. I just live with it. And yes, if it were not for my guy, I would have gone mad. He says I saved my own life. I say I did it because of him. He has reassured me every single day and evening that we would figure this out-as I searched for an answer. He does not understand anyone bailing on a loved one.

We are beyond fortunate to have these men as our best friends/lovers, yes?! yes ;)

Thank you for your reassuring and touching reply. You're pretty amazing--I admire your courage --you are a warrior princess indeed. :)

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IrishHeart Veteran

I went through something similiar except that in my case I wasn't able to keep sending cards and attending things. I hardly knew what day it was sometimes. It was a big eye opener for me when people I had known for over 10 years (I'm 31 so that is a large chunk of my adult life) stopped calling me or asking how I was doing. Even worse, was one time when I was undergoing neurological testing while my husband had to go out of town for work. I was not supposed to drive under doctors orders because of unexplained seizures. The appointment had taken months to get and if I canceled it would have been another 6 months before they could get me in. I asked several people that had been there in the past for a ride to the dr. These were not people working full time--they were mostly part time, retired or students that had flexible schedules. The person that agreed to take me ended up being someone I had only known a few months. My long time friends had bailed and didn't even return my call or call later to ask how the tests went. It really hurt for a long time. But I have moved on and I'm trying to make new friends now. A lot of the people that are my newer friends have also had/have chronic illnesses and they can relate. Most of them I probably would not have become so close to if it were not for my own illness. I did reach out again to a few people that bailed when I was at my worst. Some of them came back into my life and at least one apologized to me saying she had no idea I was that serious. Many people don't realize it because we don't always look sick. And in your case if you still kept up with most of the correspondence while sick then your friends had no sign that anythign was wrong. Of course in my case droppign everythign I found out most people just took it as a sign that I didn't care because I didn't remmember their birthday. My own mother really hurt me by giving me a "birthday calendar" and several packs of birthday cards so I wouldn't forget or have an excuse for not sending them. I broke down in tears over that because I had been so sick I couldn't get out of bed most days, didn't know what day it was because I was losign my memory, and and she was chiding me about not sending cards instead of asking me if anything was wrong.

Sweetie, I had the same kind of days-- complete brain dysfunction when I thought "I am losing my freakin mind". Just to clarify--THEY ALL KNEW WHAT WAS WRONG BECAUSE I TOLD THEM THE TRUTH! That's what makes this so difficult. Total bizarre-world. I held onto my sanity by trying to do as many things "normally" as possible. How I did it--is beyond me. I would walk into the kitchen and "forget" how to cook. I messed up the checkbook. I couldn't do any of the things I loved--including read. I used to read 3 books at a time. It was horrible and I feel for you. I felt like I HAD to continue to do all these things because people depended on me. I wish they were as reliable as I am--and I did it all with serious neurological issues. They know what happened to me; they just choose to ignore it.

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IrishHeart Veteran

Ya know when they'll "get it?" When something devastating happens to them. That's when the clueless realize that they weren't there for their friend and they'll feel terrible.

.. NOT that I'd want anything bad to happen to anyone!! But it's THEN that they'll realize!

You may be right, hon. And you know who will be there for them?...me. I'm a dope. :rolleyes:

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GlutenFreeManna Rising Star

Sweetie, I had the same kind of days-- complete brain dysfunction when I thought "I am losing my freakin mind". Just to clarify--THEY ALL KNEW WHAT WAS WRONG BECAUSE I TOLD THEM THE TRUTH! That's what makes this so difficult. Total bizarre-world. I held onto my sanity by trying to do as many things "normally" as possible. How I did it--is beyond me. I would walk into the kitchen and "forget" how to cook. I messed up the checkbook. I couldn't do any of the things I loved--including read. I used to read 3 books at a time. It was horrible and I feel for you. I felt like I HAD to continue to do all these things because people depended on me. I wish they were as reliable as I am--and I did it all with serious neurological issues. They know what happened to me; they just choose to ignore it.

Oh, absolutely. I told my friends what was going on with me too. I asked my church and sunday school class to pray for me week after week. And for months when I couldn't make it to church anymore my husband went and told them what was going on. But that doesn't mean they really KNEW what what going on. People that are healthy or have never had that type of thing happen to them have no idea. They are not there living it with you. They are too wrapped up in their own lives most of the time too. My mom knew I had been sick but she lives in a different state 500 miles away. She wasn't there in my life to see what it was like everyday. She didn't understand that I had lost my ability to read forcing me to drop out of grad school (she knew I had to take a leave of absence but didn't understand or didn't think i was really that bad).

Anyway I absolutely feel where you are coming from and know what you mean. I probably would have kept goign to thigns and trying to participate too if I had not been having the seizures. I used to be the one everyone could always depend on to volunteer or to help organize things. It was one of the character qualities that my husband says made him fall in love with me. Bless his heart. He never thought that he would be my caretaker. He loved that I was strong and independent and loved helping others. He stayed by my side however and took me to all the drs appointments and advocated for me when I thoguht I must just be losing my mind, just like your husband did. I'm so glad to hear from reading your post and a few others in this thread that there are some good spouses out there that stuck by their mates when it was the hardest. That's what marriage is all about IMO. That's true love. This struggle has made our lives hard but it's made our marriage stronger. I try to look at the good in every situation. I've lost a lot of friends but I've grown closer to my husband and learned a new compassion for those hurting that I would not have had if I hadn't been through what I've been through. You have that compassion too Irish Heart! I've seen it in your posts here. You'll have no trouble making new friends and finding your place in life again. :)

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IrishHeart Veteran

I try to look at the good in every situation. I've lost a lot of friends but I've grown closer to my husband and learned a new compassion for those hurting that I would not have had if I hadn't been through what I've been through. You have that compassion too Irish Heart! I've seen it in your posts here. You'll have no trouble making new friends and finding your place in life again. :)

Thanks, honey--and right back at ya! ;) ;)

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RL2011 Rookie

Sorry to hear any of you has experienced disappointment in others. I suggest you do what I do. Don't expect anything from anyone and that way you will not get let down by anyone.

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IrishHeart Veteran

Sorry to hear any of you has experienced disappointment in others. I suggest you do what I do. Don't expect anything from anyone and that way you will not get let down by anyone.

Hub has said similar words to me...I did not realize I was "expecting" anything until it was pointed out to me. You are right--that is exactly where the disappointment comes from.

Then again, I am the kind of person who would "be there for someone" NO MATTER WHAT--it was my mistake to think that EVERYONE thinks this way. They just don't.

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