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    myexpressions's Avatar
    myexpressions Posts: 1, Reputation: 1
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    #1

    Apr 9, 2008, 07:16 PM
    25 years lost
    My husband of 25 years left me 7 months ago because I have a long term chronic illness which he said of ( I DON'T WANT TO SPEND THE REST OF MY LIFE VEGITATING WITH YOU) he said I became impossible to get through too, we have three grown kids from 30yrs to 22yrs and the two oldest have taken on their fathers side because they also resent my illness. Yes being ill for 12yrs has changed me, but I hav'nt become an ogar, I have less interest in life and myself and that is the real problem for all of them. What is upsetting me is that I can't seem to get over the pain and hurt. Because we owned our home he is choosing to send the kids to the house to get things for him and sneak whatever he's looking for out of the house because he said he can't come for anything because he dos'nt want to upset me (a bit late for that I think) , the thing is I still love him and I know that it is truly over but I just can't seem to move on and am at the end of being able to cope I just can't go on like this anymore. I have a condition called Fybromyalgia, M.E. and brittle bone disease, I am 47yrs and he is 45, can anyone give me hope please. I've got to communicate with him because of the house and selling it.:(
    jrebel7's Avatar
    jrebel7 Posts: 1,255, Reputation: 251
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    #2

    Apr 9, 2008, 10:17 PM
    Quote Originally Posted by myexpressions
    my husband of 25 years left me 7 months ago because i have a long term chronic illness which he said of ( I DON'T WANT TO SPEND THE REST OF MY LIFE VEGITATING WITH YOU) he said i became impossible to get through too, we have three grown kids from 30yrs to 22yrs and the two oldest have taken on their fathers side because they also resent my illness. yes being ill for 12yrs has changed me, but i hav'nt become an ogar, i have less interest in life and myself and that is the real problem for all of them. what is upsetting me is that i can't seem to get over the pain and hurt. because we owned our home he is choosing to send the kids to the house to get things for him and sneak whatever he's looking for out of the house because he said he can't come for anything because he dos'nt want to upset me (a bit late for that i think) , the thing is i still love him and i know that it is truly over but i just can't seem to move on and am at the end of being able to cope i just can't go on like this anymore. i have a condition called Fybromyalgia, M.E. and brittle bone disease, i am 47yrs and he is 45, can anyone give me hope please. ive got to communicate with him because of the house and selling it.:(
    I am just so sorry you are ill and I feel broken hearted for the hurt you are experiencing. I tend to think your husband sends the kids so he doesn't have to face you because of the guilt he feels. I hesitate to say the following though I know it is right, I just find it difficult to do myself when going through difficult times so feel a little strange saying this but... the hurt you are feeling will try to bring bitterness into your heart. Bitterness destroys the person carrying it. It is just too heavy to carry for very long.

    Keep in mind that sometimes, children, even when they are older and supposed to be mature, feel fear as if they were still little children when a parent becomes ill. Anger can also enter into it, not anger at you but at the illness that has caused change in their lives. That is not your fault. In time, they will work through that.

    So many emotions are running through my head right now. I was in bed for almost a year a few years back. It was so difficult. I could barely move, felt I could barely breathe. I have a friend with fybormyalgia so am also a little familiar with this. I guess I have lots of questions as well. When a person is down physically as you are, it is difficult not to be down emotionally. I hope you are under a doctor's care. Are you in any kind of support group? I know the old saying I used when I had Epstein Barr so badly was, "Yes, we have a support group but no one has the energy to get to the meetings." I expect, although said in humor at the time, it was how we all felt. You may feel the same.

    Let me say first that you have found a site that has some very caring people on it. In time, you will see some wonderful friendships grow here. I know there are some on this site who's partners left them when they became ill. I hope they will see your post. They will be able to give much encouragement to you.

    Perhaps in further posts you can share what some of your limitations are, what type of care you are receiving and what the doctors tell you as far as what to expect. I believe strongly in prayer. I do not always get my prayers answered quickly and as I have told my grandson, sometimes God says yes, sometimes He says no, and sometimes He says wait. The waiting for the answers is the most difficult for me.

    First thing I would do is secure legally what you can secure within the law as far as assets. If he is going to stay gone, as you feel he is, then you need to be provided for and make sure you have health care in the future. Is there one person you can trust who could handle the details of such matters for you at this time? I think dealing with all the details might be too draining on your energy. Get your ducks in a row as they say.

    I don't have any fixes for you of course but please know you can vent, share, whatever you need to do here on this site and there will be people who post back to you and can give you a good "virtual" support system anyway and I will be one of them. I will be looking for further posts from you. You aren't alone in anything you go through although, sometimes, it feels that you walk alone. You are not alone. I feel sure there will be some people be able to give some sound advice as to how to proceed. Best to you.
    Allheart's Avatar
    Allheart Posts: 1,639, Reputation: 436
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    #3

    Apr 10, 2008, 01:35 AM
    Quote Originally Posted by myexpressions
    my husband of 25 years left me 7 months ago because i have a long term chronic illness which he said of ( I DON'T WANT TO SPEND THE REST OF MY LIFE VEGITATING WITH YOU) he said i became impossible to get through too, we have three grown kids from 30yrs to 22yrs and the two oldest have taken on their fathers side because they also resent my illness. yes being ill for 12yrs has changed me, but i hav'nt become an ogar, i have less interest in life and myself and that is the real problem for all of them. what is upsetting me is that i can't seem to get over the pain and hurt. because we owned our home he is choosing to send the kids to the house to get things for him and sneak whatever he's looking for out of the house because he said he can't come for anything because he dos'nt want to upset me (a bit late for that i think) , the thing is i still love him and i know that it is truly over but i just can't seem to move on and am at the end of being able to cope i just can't go on like this anymore. i have a condition called Fybromyalgia, M.E. and brittle bone disease, i am 47yrs and he is 45, can anyone give me hope please. ive got to communicate with him because of the house and selling it.:(
    I too, am so sorry you are going through this, and Jrebel gave you such wonderful insight and caring advice.

    For right now, there is one person for sure, that you know you can count on... and that is you. Don't contribute with your husband in keeping you down.

    For right now, your emotions are all over the place as well as experiencing some deep and incredible hurt. So much so, that it is so hard for you to even grasp what they are doing. It's hard for me.

    But you can't control what they are all doing, especially your husband. But you can control how you react to it.

    If you need to just go through the motions, with the house and all, do that. I would not, try and extend a hand out to the husband. You need to worry and concern yourself about you. That's it.

    The children add another layer of hurt. But as Jrebel, said, they could be all confused and hurt and swirling from all the turmoil. But I would take the same stance with them as well.

    Just try and distance yourself from any further hurt and pain. Try and accept, not agree, but accept what they are all doing, as their actions, their choices not yours. And try and gain some inner strength.

    Expect and want nothing from them during this time. This is such a painful and hurtful time for you and allow no more.

    We are all here for you as well, so you be sure and let us know how you are doing.

    I am so sorry for all of this, but none of this is a result of anything you have done.

    Don't help the others add to your pain.

    My hope is, when all the upheavel settles down, slowly, the children will work their way back towards you.

    But in the meantime, work on healing yourself and want better for yourself, which you so rightly deserve.

    Our hearts are right with you.
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    JoeCanada76 Posts: 6,669, Reputation: 1707
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    #4

    Apr 10, 2008, 01:46 AM
    Maybe they feel that the only way to get action from you. Trying to get healing for yourself is by leaving? Maybe in their minds they are actually helping you by doing what they are doing? See the thing in your post sounds like you gave up before they even left? If I am wrong please let me know.
    I also feel that instead of focusing on the pain of them leaving, you need to focus on trying to heal yourself. Physically and mentally. Meaning now is a good time for counseling.

    Fybromyalgia, M.E. and brittle bone disease, I also do know that Fybromylagia is very diffucult to deal with and some doctors do not even agree on treatments, it is actually a hard condition to treat from what I know of. I do know that physical ailments and chronic conditions can have an effect on everybody not just the family member that is going through it.

    So the pain of that is felt by all family members in different ways. Fear of something can have an impact greatly.

    I hope you take the advice of all the posts above and make sure that your taken care of legally. You have rights here. Make sure that you stand up for them.


    EDIT:::::::::::::

    25 years lost, No. 25 years of life with a family and children, Yes. You see life experiences change. You have the choice to make the best of these changes. It could be the best thing for you but you might not see that until maybe a few years looking back. I guarantee you will be in a better situation later.
    Chery's Avatar
    Chery Posts: 3,666, Reputation: 698
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    #5

    Apr 10, 2008, 02:26 AM
    My dear, I too have had to deal with Fibromyalgia all my life, a degenerative spine, arthritis, heart problems and now I have lung cancer and will not live out the year. So, I know how you feel and know personally what you probably went through due to the Fibromyalgia alone - especially since it is not just in one place and does not only give you one symptom. When the body hurts like heck and you are in constant pain - you don't have the best mood and cannot give others the attention and 'affection' they want and expect from you when they want it. My ex-boyfriend was nasty when I could not be affectionate toward him when he needed it and accused me of making all kinds of excuses not to be close. THEY DO NOT UNDERSTAND.. and I was sick and tired of constantly hurting but still not having anyone understand ME, caring for ME. That lead to depression too. So, believe me, I know where you are coming from.
    I am pressed for time today, but will contact you via Private Message and give you my email address, so that you can contact me if you like.

    We will do our best to at least help you get yourself feeling a little better about YOURSELF dear, so don't let yourself down any further.

    I hope that you take my invitation to write me serious and look forward to SHARING with you in hopes that you know from us, that you are not alone in this.

    Sending you a Virtual Hug for now,
    Chery
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    talaniman Posts: 54,325, Reputation: 10855
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    #6

    Apr 10, 2008, 07:43 AM
    I was going to say sorry for your loss, but it wouldn't be the true feelings that I have. I think it's a shame, that someone can just walk away when you need them the most, but this isn't about them any more, its about you, and what you do, especially since now you know your not alone. For sure there needs to be a support system in place, and all sorts of legal issues to deal with. Start with your doctor, and get with some support groups to help you through these emotional times, and go from there. They can also suggest legal assistance, and practical advice, that will be a big help through this turmoil. Don't give up, just keep doing what your doing, reaching out for a little help. Ask us any questions you have, and vent to your hearts content, as your among some very caring people, so you will NEVER be alone.
    Chery's Avatar
    Chery Posts: 3,666, Reputation: 698
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    #7

    Apr 10, 2008, 02:19 PM
    Talaniman is so right! It is THEIR loss! They just don't know it yet.

    You are not alone - not here with us. But it will also help you to be with people who understand and can help you where you live.

    May I suggest that you look up your maladies in the internet, then print some of the information and provide your children with the printouts or send them the links per email for them to read so that they can learn a little about the diagnoses and symptoms. At least that way they will notice that there are people who sometimes just cannot physically function as normally as others without excruciating pain as a result. If your husband would have had information on this, he could have at least showed a little compassion and the entire family might have been inclined to offer you support.

    It took my family a long time to understand and recognize the fact that sometimes even stirring cake-batter, or bending down or reaching up - the normal daily functions that are taken for granted - can cause such pain that you get frustrated and feel like giving up and feeling totally worthless. Or when you are exhausted after doing normal chores that create such pain and naturally make you angry at your body and then angry at the world, and angry at your family for not accepting you and your problems and giving you help and support - or even an encouraging hug and asking if there is something that they could do to help you get through the day by taking over some of those chores that they could do.

    Look at it this way, your husband (in my opinion) became selfish and inconsiderate - and forgot his marriage vow, i.e. 'in sickness and in health' - so if the table were turned around - he would cry like a baby. Well, he and the kids will now have to learn to totally care for themselves, do their own cooking and chores and will have to become independent - ready or not. Give them time, they will remember and maybe appreciate the times when you were around and well enough to enjoy quality time.. these are things they will never forget and they will all be ashamed of their actions. But that is their problem now.

    You, on the other hand, must try not to let yourself sink into that deep hole that leads to more frustration, dislike of yourself (your illnesses are NOT your fault - you did not cause them!). What will be your fault is your choice to let go, become a 'messy' quit your hygiene, stop eating regularly, stop taking medication (or taking the wrong kind) - (so talk to your doctor and plan on how to treat your symptoms as best as possible), IN OTHER WORDS, you need to care enough about yourself to stand up - despite the pain - and find some things you like to do and look forward to doing them - even if you have to find new things - as long as you don't give up.

    And yes, join a group. I have a social worker that comes to visit and help me with the difficult things in the house (my health insurance is still good here in Germany, so I'm lucky in that aspect), but it should not be too difficult in finding a support group for yourself with people who help each other with minimal financial burdens. It is important to keep in contact with people! Don't seclude yourself - that is the worst thing you can do, I did for two years and it was no fun and real hard to finally get out of.

    Just through conversation (again, I know how hard it is to communicate and converse about pain and hope people understand, in hopes they don't reject your constant 'complaining'- but they are out there!) I found out that a neighbor of mine has similar problems and she and I get together and find something to do that makes us feel that we can still function in some areas in life, and we tell jokes, laugh, and talk about our pain and cry, but when I go home, I feel better just because I found a 'soul (or pain) mate and that we did forget our problems for an hour or two while being good to ourselves - eating fun things, listening to good music, watching a movie - just being normal for a while helped.

    I also thought that that was not enough sometimes - but this at least helped me get out of the slump I was in and made me decide to do what was best for me and stop caring of what those that don't understand thought or cared about. I became stronger each time I asked for help and got it - it was hard to ask for help in the beginning - but it is possible to swallow pride in the right amount - and I think YOU can do it too.

    Nobody can take our pain away, but you and I can reduce our mental pain by gaining a better outlook and avoid those idiots that refuse to comprehend what we are going through - and VOICE our feelings too. I tell people off when they chide me and let them go their own way. I appreciate when some understand half of what I'm going through and stand up straight.

    It still sucks sometimes to be alone, but at least I don't have to put up with complaining jerks that refuse to understand. Now that I have cancer too.. I have chosen not to have surgery or chemo because I know that that won't help either, just prolong pain and misery, and that is something I am too darned proud to put up with. I have accepted my fate, and honestly enjoying most of the time with things I want to do, things I want to see, and spending time with my beloved daughter and my little grandson. Of course the sadness creeps up on me, but I let it, accept it as part of my life, then call someone and make a date to spend some time taking pictures of them, laughing with them - sharing time for as long as I can until the pain takes over. Then it's time to rest and gather energy for the next time to be together. I still go to therapy and naturally cry my eyes out - but this does not predominate my day - and I don't think you should let it happen to you.
    Honey, there is nothing we did wrong, there might not be much we can do about our situation.. but one thing for sure, - DON'T let it predominate your life - don't let it take over completely - don't give up! That would be cheating yourself of things that you can still enjoy - and YOU have every right to that enjoyment, any time you can get it.

    Who knows, you might even be able to enjoy your grandchildren some day - even with your restrictions. Your kids will some day realize their loss and shame of what is happening now.

    So... if you have a good doctor, tell him/her how you feel, if the medication is helping and ask if they have a list of support groups in your area. Then take care of the legal and beurocratic stuff - make sure of your rights and don't give up or give in to anything you don't want to. Pick yourself up, and stand up. Go get your hair done, get some new shoes or clothes. Take yourself out to dinner and eat what you would love but most of the time could not afford because of the kids... By doing this, you prove to yourself, and your family that you will not give up and maybe they will open their eyes and realize that they have lost someone special by giving you up - and it is their loss! They will realize this in the longrun.

    It might seem that I am going on and on, but you did not email me and I feel a strong need to let you know that you have a right to your life - that you should not give up on yourself!

    I am 11 years older than you, and have endured pain 24 hours a day, 7 days a week since childhood, and have survived - no matter what.

    YOU CAN DO IT! There is more help now than there was before, medically and psychologically - so take advantage of it and let people help you feel better - even if it last only a few hours a day - you are worth it!

    I sincerely hope that you won't give us up either. As Tal said, you can vent here. Seek out local help - and to heck with all others because they will some day have pains and need help too, and they will remember with shame what they are putting you through right now, honest.

    Hoping to hear from you here or via email, just don't let go!


    All my friends here on AMHD are truly supportive and I love them all for their support.
    And we will be here for you too.

    I have a 16 year old cat that shares unconditional love with me and comforts me. If you like animals, maybe an older cat from a shelter will purr in your lap, listen to you when you cry, and is there when you need him. Believe me, they 'feel' with you and accept you as you are.
    lmnotok's Avatar
    lmnotok Posts: 217, Reputation: 37
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    #8

    Apr 10, 2008, 08:42 PM
    I think I have different idea on this.

    I have an aunt who suffers Fybromyalgia, like you. And through a conversation I had with her, I understand why her family NEVER leaves her. She always has pain inside but she always told me " If you have pain, then DONT ever make other people suffer them with you. Take the pain, allllllways be positive and happy even when you are hurt the most. I know it hard, and its very normal for ill people to be nagative but i CHOSE to be positive and cherish every moment i have left. A lot of my ill friends think its an ogligation for their family member to take care of them but its a on-way-street because when you're ill you can't repay all of that so why make them do things for you while you can hardly do anything for them? If someday my family leaves me, i will just say "I appreciate the time we had together and I know its natural for you to leave me."

    She taught me that the very 1st favor you can do to others when you're sick is to taking care of yourself and making yourself positive and never makes anyone suffer your pain.

    So yeah, i rarely see her down. There is even one time the doctor said she couldnt survive after a year but we all surprised by how strong and positive she is. And guess what? She still lives now after even 10 years and the disease seems to diminish everyday. I admire her alot. I ask her how she can be like that. She said its a decision. Dont let fate defeat you. Never give up on yourself and never think that its your family's loss to leave you. Take a step back to fix your illness with a good doctor and always remember that 50% chance of defeating disease is MIND POWER (being positive).

    So to your question of how to communicate with your husband, i think you should follow what my aunt has done. Be positive and think its ok, its normal and simple. Say "I appreciate time we had together, I'll never forget. About the house, I think we sell and split it as law."
    jrebel7's Avatar
    jrebel7 Posts: 1,255, Reputation: 251
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    #9

    Apr 10, 2008, 10:32 PM
    Imnotok, you give a lot of really good information here regarding positive thinking, making good choices, making decisions in your own mind as well as verbally speaking those good positive decisions. I take nothing from this. I believe much is accomplished by the words we choose to speak. I have a sister-in-law who has cancer, her esophagus is the size of a 'coffee stir straw', she has to have it stretched periodically, cancer has encased the carotid artery, she now has a food peg to receive nutrition and meds as she cannot swallow, even saliva at times. She has a port for chemo, is broken out in a Chemo rash. Travels three hours for the treatments then three hours back home. My brother has had a stroke some years back and deals with other illnesses and pain. Both always ask about others when we talk. They ask how my children and grandchildren are doing, how is this friend, how it that friend, is our garden planted yet, and on and on before she or he will share much about their illness. Yes, I totally respect their ability to do this.

    Having been in bed for the better part of a year sometime back with a pulse rate of 115 for months, ran temperature-lowgrade, had muscle pain, if I would reach to the right, my arm would go to the left at times, headaches, just shooting pains in the back of my head all the time, pain in my spleen area, had to have help getting up or down, vision disturbances, and more, etc. I did not have the energy to speak, much less be positive and try to uplift those around me, although generally I am that way. As I was getting better, one day, I got up and wiped down the bottom half of only one side of my refrigerator and was in bed without movement for four hours after that. Thankfully, my husband went out and purchased a pappason chair for the den so that I could lie in there and still be with family in the evening though most times, I remained in bed. My children would sit on my bed and tell me about their day, give me hugs, tell me how much they loved me. Doctor after doctor after doctor kept telling me there was nothing wrong with me according to tests. I was tested for Lupus, Leukemia, all soft tissue disesaes. One day, one doctor said, "Well, I run elevated temp every night." My husband asked him, "Well, does it make you feel ill?" He said, "Well, no." My husband forthrightly said, "Well, it does make my wife feel very ill." Get this, my children's doctor was the one who got me to a specialist where I was diagnosed. Ok, at least the illness had a name but I had never heard of it before and the doctor stated there was no cure or meds to help as of yet. Later, I heard a segment by Dr. Cory Servass on 700 Club speaking about my illness. She recommended some amino acids in high doses, eating foods high in that amino acid and low in another, had information regarding the illness. I was stunned. Later I heard a segment on 20/20, a news show in the states on this illness. They interviewed some people who had it and their spouses. One husband left the wife, other's didn't, etc. One said he thought his wife was crazy. I sat and cried through the segment with relief that there were other people that understood what I was experiencing (not that they were ill also but just feeling not so alone). I turned to my husband and asked, "Did you think I was crazy?" He said, "Baby, I didn't know what was wrong. All I knew was that you were ill. Whether it was physical or emotional or whatever, you were ill and I love you and it made no difference." I again was stunned. Never gave it a thought he ever thought it was anything other than organic in nature but still, he stayed by my side. Within a few weeks of following Dr. Servass's suggestions and getting with my doctor on amounts, I began to see and feel some of the symptoms subsiding for short bits of time.

    I won't go into the whole segment of getting better. I still have bouts with it where I am just knocked on my butt. I use to work out with weights but after the illness, if I did, I was in bed for days. The doctor explained why which I won't go into here as this really is not about me... I know it reads this way... but my point of all of this is that I was not always positive. I went from praying that I would live long enough to raise my children to praying God would just take me on Home so they could get on with their lives. This was back in 1985. My sister-in-law and brother do share how they are feeling with me but they bear their heart and soul to their children and to each other. Myespressions should have the freedom to voice her feelings, fears and sadness, how she feels physically and emotionally with her husband and her children. Families do that. Best friends do that. I had two friends who called all the time. One called every single day during that year to see how I was feeling. Sometimes, all I could do was barely say hello, then say, "same" when asked how I was feeling. They did the talking, visiting. I said "Thank you for calling. Bye bye." They still are my friends today. I went on to better health, thank the Lord, and became Vice-President of a Beauty Supply Company, then years down the road worked for the Dept. of Human Services, doing payroll, training sessions in front of close to 100 employees, served three units, setting up cases on the computer and was an EBT Specialist.

    I don't agree that it is normal for family members to dessert those they love in their time of need. I do believe that as difficult as it is to be with a mate or child or friend or parent who are ill, one should not walk out of their lives. It was not easy on my husband, children, friends, parents, siblings, etc. seeing me lie in bed for months, barely moving or talking, shaking at every movement. They all had to take on extra duties in the home plus caring for me, but they stood with me as I stand wtih Myexpressions now and with Chery and all others going through difficult times. It is not acceptable for those we love to hurt us or leave us when we hurt or are ill. It happens and I understand you are basically saying to accept it with grace and dignity. I agree that is great advice. I just needed to write this to share that sometimes, illnesses take more from us than we could ever imagine. I ride motorcycles, fish, hunt, have five grandchildren and am so grateful for my family and friends who stood by me all the way, until the sunshine did begin to shine again in my life.

    On the flip side of this, we weren't given a lot of information on the husband or children. It could be that although she loves them each dearly, they, by way of choices they have made on how to act and react to this illness, have become toxic to Myespressions. In that case, their leaving and not being there emotionally for her may allow her to open up to others in the family and with friends who can be a positive force in her life and her health could improve just by way of toxcidity being removed from her daily life. Just a thought.

    I am not as strong as my sister-in-law. I am a bit whiney when I don't feel well but by the same token, I am very ministering to my family and friends when they are ill or down or not feeling well. I just want Myespressions to know that having been through a difficult illness, I do have a heart for what she is experiencing.

    I respect your outlook of being positive and I do believe it carries a lot of weight in our getting better and having a better quality of life but I also believe it is okay to break down with those we love and express the pain, the fear, the frustrations from time to time. We should be allowed that freedom in the realm of love and acceptance.

    I am proud of your aunt also and admire that she has been able to be so positive. I wish her many more happy years. We each handle situations dealt us in the best way we can and sometimes, we learn through these times how to better cope with adversity in the process. But when people we love leave us, it still hurts yet we even have to learn from that.

    Myexpressions's post did not seem negative. It sounded to me like she was needing some emotional suport and encouragement. When someone we love leaves us and we are healthy it is difficult enough but being ill makes it so much more difficult.

    To be fair, I do need to say that being a "caregiver" is a difficult position to be in and brings with it, certain stresses which do affect attitudes but if the person who is ill is striving to do they best they can, I believe the caregiver should also give all they can to the relationship. Caregivers need breaks from time to time, it is paramount to their health and well-being but walking out of the marriage?

    I think it is also important to realize that with each illness, there are different levels of severity. Two people having the same illness will not always be affected the same way. Plus Myexpressions is dealing with three health issues. I am just thankful for all the deeply caring and compassionate people on this site.

    Please forgive the length of this post. Just have so much compassion for those who are hurting, the words just keep tumbling forth. I close now with thankfulness in my heart for each of you.
    Chery's Avatar
    Chery Posts: 3,666, Reputation: 698
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    #10

    Apr 11, 2008, 05:38 PM
    Just as has been said, we go through our daily routines in hopes that our illnesses will not 'make us pay' for overdoing it. In my case, every time I spend time with my grandson who is almost 2 and very active - I still spend as much time with him as possible, laughing, singing, dancing, and walking. I know that when I get home from these visits that I will be in pain and agony for days, but it still does not stop me. That is my choice - to enjoy the time with my family and have QUALITY time with them no matter what the cost. That is positive thinking, and my friends also see when it is time for me to go home and rest after visits with them. However, it did take them a long time to accept and understand my illness and they stuck with me through all of it. That is something that I am also grateful for.

    Unfortunately, my last employer and co-workers did not feel this way, so here I gave up and lost my last job. I'm sure that there are many of us out there that fight every day of our lives to succeed and prove ourselves over and over just to keep up and existence - then go home and collapse in unbelievable pain.

    That is why I suggested that myexpression's family get educated on the illness and maybe they will come to realize that the love they would share and understanding they would give would help her in reaching a more positive outlook. They may need a 'break' now and then, but in my opinion they should not just selfishly leave her on her own and I will not change my mind in that aspect. No matter how long it takes, I think she is worth the time and effort because she gave as much of herself to her family as she could.

    Having this illness since childhood did not make my life easy and it was always a struggle, and I am sure she knows her limitations and has tried her best for so long. That is why I think her family should also give their best to meet her half-way. We are not talking about a short relationship here, we are talking about a family - with children who grew up within this family. Where are their love, compassion and values? What will they learn from all of this? Will they go on in life looking for perfectly health people surrounding them so that they don't have to be bothered with 'handicapped' individuals who make them feel uncomfortable?

    Even though there is enough information today, there are doctors who still do not believe or share the same view on Firbromyalgia - (my primary provider did not) and it can take a lot of suffering and 'shopping' for the right clinician who is willing to administer the tests and find a treatment program for their patients. So, it also takes time, patience and determination of the individual to finally find that caring provider. That alone, is an achievement (IMO) because it can drive some psychologically labile individuals in the wrong path and to give up - yes even suicide... Try telling a doctor that you have constant pain, headaches and fever with night-sweats - and burning heels - and they will most likely diagnose depression first after all the 'normal tests' come out negative.

    So, I feel that anyone who seeks help and does not give up has a positive outlook already... but we also need the support of the important people in our lives.. and we don't deserve to be alone in this. Not even a healthy individual deserves to be alone when they need a shoulder.

    When I was young, I sang with a band and danced (as a second job to pay for my car), worked regularly, studied medicine for a few years, got married and lost two babies of three. Was a Military wife - which meant moving almost every three years (talk about pain!). Before that, I was live-in childcare provider for my two brothers from the age of 10 years on. My life was always busy, and nobody cared about my pain as long as I was able to 'provide' for them.. NOT all of us give up or have a lousy outlook, dear Imnotok, we strive to be better, do better, and want to hold on to a 'normal' life so strongly no matter what comes our way. But if we don't get support, understanding or even a hug now and then from those we care about - it hurts twice as much!

    Myexpressions.. you have my support, you have my Virtual hug, and I laud you for not giving up all these years because I know what struggles you are confronted with. I still urge you to keep on going.. get the support you need and keep the hope in your heart that you influenced your family enough while raising the kids, that they will eventually let the love they have for you over-ride the urge to 'escape' being around you in your time of need.

    They don't feel what you are going through, therefore they don't have the inner strength that you have, not even half.

    Don't let their ignorance pull you down, and keep on hoping that some day they will appreciate that you gave what you could and love you for who you are.

    Don't forget to do something nice for yourself... you deserve it!

    jrebel7's Avatar
    jrebel7 Posts: 1,255, Reputation: 251
    Ultra Member
     
    #11

    Apr 12, 2008, 11:01 AM
    Quote Originally Posted by Chery
    Just as has been said, we go through our daily routines in hopes that our illnesses will not 'make us pay' for overdoing it. In my case, every time I spend time with my grandson who is almost 2 and very active - I still spend as much time with him as possible, laughing, singing, dancing, and walking. I know that when I get home from these visits that I will be in pain and agony for days, but it still does not stop me. That is my choice - to enjoy the time with my family and have QUALITY time with them no matter what the cost. That is positive thinking, and my friends also see when it is time for me to go home and rest after visits with them. However, it did take them a long time to accept and understand my illness and they stuck with me through all of it. That is something that I am also grateful for.

    Unfortunately, my last employer and co-workers did not feel this way, so here I gave up and lost my last job. I'm sure that there are many of us out there that fight every day of our lives to succeed and prove ourselves over and over just to keep up and existence - then go home and collapse in unbelievable pain.

    That is why I suggested that myexpression's family get educated on the illness and maybe they will come to realize that the love they would share and understanding they would give would help her in reaching a more positive outlook. They may need a 'break' now and then, but in my opinion they should not just selfishly leave her on her own and I will not change my mind in that aspect. No matter how long it takes, I think she is worth the time and effort because she gave as much of herself to her family as she could.

    Having this illness since childhood did not make my life easy and it was always a struggle, and I am sure she knows her limitations and has tried her best for so long. That is why I think her family should also give their best to meet her half-way. We are not talking about a short relationship here, we are talking about a family - with children who grew up within this family. Where are their love, compassion and values? What will they learn from all of this? Will they go on in life looking for perfectly health people surrounding them so that they don't have to be bothered with 'handicapped' individuals who make them feel uncomfortable?

    Even though there is enough information today, there are doctors who still do not believe or share the same view on Firbromyalgia - (my primary provider did not) and it can take a lot of suffering and 'shopping' for the right clinician who is willing to administer the tests and find a treatment program for their patients. So, it also takes time, patience and determination of the individual to finally find that caring provider. That alone, is an achievement (IMO) because it can drive some psychologically labile individuals in the wrong path and to give up - yes even suicide... Try telling a doctor that you have constant pain, headaches and fever with night-sweats - and burning heels - and they will most likely diagnose depression first after all the 'normal tests' come out negative.

    So, I feel that anyone who seeks help and does not give up has a positive outlook already... but we also need the support of the important people in our lives.. and we don't deserve to be alone in this. Not even a healthy individual deserves to be alone when they need a shoulder.

    When I was young, I sang with a band and danced (as a second job to pay for my car), worked regularly, studied medicine for a few years, got married and lost two babies of three. Was a Military wife - which meant moving almost every three years (talk about pain!). Before that, I was live-in childcare provider for my two brothers from the age of 10 years on. My life was always busy, and nobody cared about my pain as long as I was able to 'provide' for them.. NOT all of us give up or have a lousy outlook, dear Imnotok, we strive to be better, do better, and want to hold on to a 'normal' life so strongly no matter what comes our way. But if we don't get support, understanding or even a hug now and then from those we care about - it hurts twice as much!

    Myexpressions.. you have my support, you have my Virtual hug, and I laud you for not giving up all these years because I know what struggles you are confronted with. I still urge you to keep on going.. get the support you need and keep the hope in your heart that you influenced your family enough while raising the kids, that they will eventually let the love they have for you over-ride the urge to 'escape' being around you in your time of need.

    They don't feel what you are going through, therefore they don't have the inner strength that you have, not even half.

    Don't let their ignorance pull you down, and keep on hoping that some day they will appreciate that you gave what you could and love you for who you are.

    Don't forget to do something nice for yourself... you deserve it!

    Cher, I tried to share the "reputation" but it wouldn't allow it just yet. Great advice, suggestions and insight Chery, which sadly, many times only comes with experiences one has already gone through or is going through. We are soul sisters, you and I! Interesting the directions our lives take and the wonderful people who come into our lives, quite by surprise to us, but all in God's plan to bless each of us. You are truly a blessing to me. You touched on and brought up some issues that had not yet been addressed in this thread. You bring so much to the table of sharing. :)
    Chery's Avatar
    Chery Posts: 3,666, Reputation: 698
    Gone, But Not Forgotten
     
    #12

    Apr 12, 2008, 11:27 AM
    Dear Jan, Also had to 'spread' it

    Thank you too for sharing so much with us. I hope that myexpressions will share more with us and express herself. I sincerely hope that we have been able to help her in knowing that she is not alone and that she can feel at 'home' here with us.

    You can email me any time, my dear soul sister, just add AMHD in the subject so that I don't ignore it as spam. I tend to block messages because my energy is limited and we all know how many crazies are out there...

    Myexpressions, I hope we hear from you soon, dear. Please let us know how you are doing.

    sully123's Avatar
    sully123 Posts: 567, Reputation: 148
    Senior Member
     
    #13

    Apr 12, 2008, 01:38 PM
    My heart goes out to you. I have a sister who suffers everyday from the fibromyraglia, just what your going through. It's horrible! I don't think much of your husband leaving the marriage because of this, evidently he didn't take his vows to seriously 25 yrs ago, for better or for worse and sickness and in health. You need to get some kind of support and think of yourself right now. You are important and your health.. The kids will come around eventually, good luck and keep us posted

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