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dawn
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Just wondering how everyone copes with being ill and still being part of their family.

I am starting to feel like a burden. I have thought about getting an apartment by myself just to free everyone up. I also wonder if it would benefit my health also by eliminating alot of stress.

I really feel like my husband has had his limit in dealing with me being ill. Our adopted son is 14 and he would do fine with his dad. My other 2 boys are 23 and 25 so they are independent.

I don't want this to sound like I want pity. It's just I don't feel like I belong here anymore. We were always active as a family. I know I'm depressed. My psychotherapist says "situational depression." She suggested I live alone in fact. She has met my husband. He is a controlling person, very intellectual. I think he feels helpless that he can't "fix me." Our relationship has really deteriorated. I feel like he's

more of a dad figure than my partner.

Has anyone divorced after getting this illness? I worry about the stress of divorce. I get anxious thinking about being alone and sick.

Don't know what to do. Any "wisdom"would be appreciated.

Dawn

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dear Dawn,

went thru that phaze about 3 1/2 years ago, worked it out. i have a son 11 and daughter 7, felt like i had become a lump for the kids to lay on and just someone in the house who is just "watching". still have those days.

divorce is such a hard word. have you concidered "seperating" and seeing how all of you do first, before following thru with it. every few months i go and stay at my mother's house for a few days. have you tried talking about this with your husband? have both of you said what is causing the trouble? tried counseling together to work thru it.

i have heard of many relationships that have failed to flourish, or have ended, because of this and other chronic illnesses. just a fact, 67% of marriages fail because one member of the family has a chronic illness, a family with 2 chronic illnessess has a near zero chance of suriving. i guess my hubby and i are one of the few lucky ones. between my POTS and his manic depression, we have managed to work thru what ever happens.

i hope you find some guidence and make the choices that work best for you and your family.

best of luck,

blackwolf

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Dawn, I am sorry. I think we all go through periods like this. I am totally dependent on my son to get me everywhere, or my husband when he actually gets a day off, because he has to work so much overtime now to support us. We have had rough times and times I thought it would be better if I just left, as I have nothing to offer, except my bum on the couch. I have talked to my husband about this and he says he would be miserable without me. Have you just come out and asked your hubby? We have no intimacy in our life and haven't for over a year. Talk about father figures! Chronic illness doesn't just affect the person with the illness, which is why I highly recommend family or at least couple counseling. My hub is very intellectual too and therefore is not very emotional at all, which can sometimes be hurtful, but come to find out it's just fear and frustration that he sees me miserable and can't fix it, like you said, but because he loves me, not because he's sick of me being sick. Have you asked him to go to your counselor with you. If he hasn't seen him/her, it's pretty drastic that they would suggest separation. Both sides need to be aired. It may be that it's what needs to happen, but do realize that probably everyone on this site has felt exactly like you at one point or another and I think most of us have muddled through. Even the best marriages go through rough spots, but add this into the mixture and zowee. Just know we are here for you. I'm sure there are going to be plenty of responses to this thread, so hang in there. We're pulling for you either way. morgan

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Thank you Blackwolf & Morgan,

I have asked my husband to go to marriage counseling, his response was a big NO.

He thinks it's a bunch of bull___. He has this "warrior" attitude about everything.

Separation would be like the end for him. He would just move on.

My parents are dead. I do have a sister and a brother who would always be there for me. My brother who I am closest to lives 350 miles away.

Sometimes I think with all this time on my hands and no energy to do things makes me think way too much.

Our marriage is not something we can really discuss unless I have a plan, he would just say "what do you want me to do?"

It's just such a hard adjustment because I was always so independent. I never asked anyone for anything. I am just so frustrated with the helplessness I feel.

Dawn

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I often feel like a burden to my family but I have tried to realize that I did not choose for this disease to hit me. I would much rather be working and doing with my family as I did several years ago but that is not the path that was chosen for me. My husband at times seems to want to make me more dependent than I think I am and then there are times that I don't think he believes I'm sick. We haven't had marital problems and I don't forsee it but I do feel guilty. Guilty for the things that they (hubby and sons) miss out on because they won't leave me alone. I have thought about leaving also but that is in my minutes of severe depression. I'm sorry you are having to go thru this, you aren't alone, and I wish I had words of comfort and wisdom for you.

purplefocus

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I am sorry you are going through this very difficult time and to some degree we all pass through these relationship difficulties when learning to adapt our lives. Our illness is not something we asked for and not something our families asked for either. In my case I married the year I became ill so we have not had any illusions although we probably did have expectations things would improve more than they have. My husband is pretty independent and we make sure that he has a life doing things he loves without feeling guilty that he needs to be with me and forego what he enjoys. This is so hard for me to sit back and watch him enjoying things but I get that it is important to our marriage. We also have time when it is just the 2 of us and really enjoy being together.

As for separating, it does seem a drastic step but do you feel that you have tried everything else? My doctors have all told me from the beginning and I have learned first hand that isolation can be the worst thing. It is too easy to pull away from others, especially if you are someone who is not used to asking others for help. I would hope that if you decide to move out you wouldn't do it unless you have built a really strong support system to see you through. You may find relief from one kind of stress only to realize a new type of stress.

I think the idea of getting away on a regular basis is a good idea. My husband travels a great deal and during those times I try to look at it as a positive thing for both of us. Just being away can help give a fresh perspective.

whenever I feel like a burden or that I am not contributing what I would like, I just ask myself this one question, "if it was my husband or child who became injured or sick long term, would I stay and do my best?" Also, remember that you are teaching your sons about compassion, courage, vulnerablilty and a lot more....more than you realize at this moment.

good luck to you as you work through this difficult time. remember to take care of yourself in the process.

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Hi,

I cannot live by myself because I cannot carry more than 5 pounds. If I would leave my husband I would have to go in a nursing home. I have much more freedom in my house. My husband has also more living with me than being alone so we decided to stick together.

Ernie

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Dawn, your story sounds like mine to a "T". Every part of it. I definately feel exactly the way you do, and husband is tired of all this illness too. Now I have passed it on to my 17 yr old son. :)

We have been married for 21 yrs in June with 19 and 17 yr old sons. Our marriage had been a little rocky from time to time before but since I had to quit my job, lose my income, became helpless, etc it has pretty much went down the tube. We are still together but I think it is only because I have no where to go. Both of my parents have passed as well. I do have two brothers and two sisters but they have their own issues and living with them is not an option.

We are struggling beyond words for money, food, etc. and of course it is all my fault. (I am waiting for a hearing for my SSDI which is an 18 month wait) We argue over that one frequently. I could go on and on but you pretty much said my life in your post. I feel worthless, useless, guilty, and a burden.

I hate to sound like a hippocrit but please don't give up. Do what you need to do to make your life better, and your health. Don't take any drastic measures without thoroughly thinking it through. If you ever need to talk, feel free to email me.

Please let us knwo how you are.

Hugs,

Danelle

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Thank you for your support.

Geneva, your post was one that gave me alot to think about.

It brought up my guilt issues.

My first husband Steve (the love of my life) and I were married when we were 18. High school sweethearts. Life was wonderful, he was an athlete, a discus thrower. He got a scholarship to the University of Washington in Seattle (his brother played for the Sonics). I had the dream life. He qualified for the Olympics in the 1970's. We were best friends.

Then...my stepdad got throat cancer back in Wisconsin. He insisted on dying on his farm. (Had his jaw removed, a trach) it was just too much for my mom so we moved back to Wisconsin with the intention of moving back to Seattle. He fought for 2 years.

At his funeral I was 6 months pregnant with Ben. We got kind of comfortable being back home. The Saturday before Thanksgiving in 1982 (Ben was 15 months old) Steve suffered a cerebral hemorrhage. He had brain surgery which left him paralyzed on his left side and with an IQ of a 3rd grader. They had to remove a large portion of his brain due to an underlying AVM. He was hospitalized for 9 months. To make a long story shorter after 2 years I divorced him when he also developed manic depression. Life was a stress filled ****. It is all like a blurr to me.

He is still alive and lives with his mother who is 89 going on 60.

So did I stay and do my best? Yes, I think I did. But in the end I left. I've seen therapists and psychologists and the guilt never leaves my heart. When I see him I get physically sick afterwards. He's a shell, he's not in there anymore.

I don't want my present husband Larry to feel like he has to stay. I think the reasoning is "I left", I can't expect more from him than I could deliver.

Dawn

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There is no doubt that POTS puts a huge strain on familial relationships. This is something we've struggled with since I first got sick several years ago. Dawn- it sounds like you have personal experience being on the other end of things, which I think may have a lot to do with your decision not to "burden" your family.

My boyfriend and I were 19 years old when I got sick and had been together for about 2 years. We actually did separate for a while (very short while) during the worst of my illness, because we did not feel at that age we were ready to embark on such a serious journey together. I was mad, depressed, and bitter to live with during that time and I did not blame him for the way he felt. However...ultimately he decided that he wanted to make things work out. Our son was born the following year which I feel has really helped us make it. Being a family created such a bond that it gave us something to focus on besides me and my sickness. I got a little better with time and came back to about 50% functional overall. I commend him for being so young and so willing to be the provider for our family- I have not been able to hold any type of real job in almost 4 years, and he has had to deal with all my whining, doctor appointments, bills, credit card debt, lack of reliability, bad days, you name it. And he's still here. In a sense, I feel that our responsibility as a member of a family is to support one another no matter what. Nobody should feel like a burden, but it does happen- I sitll feel that way a lot! I just try to give back in other ways that I can feel useful. If I am at home all day then I try to make sure he has a yummy meal at night or gets a back massage. It really helps both of us feel like we are participating. But I know that it can be very strenuous on a realtionship, and there have been days when I wonder if his life would be better if I just went away. I'm sure it would be easier, but how would I feel if the tables were turned? I would really want to be there for him if I possibly could. I wish you the best in your decision, and I hope that you can find a solution that will work for your family and everyone can be happy. Keep us posted!!

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Dear Dawn, I admire you very much. You are a brave, strong person who has experienced a lot and gotten through beautifully. Please don't compare your illness with what you went through with Steve. You are the same wonderful person that you were before you got sick. You have physical limitations, but are able to contribute emotionally and mentally to your relationships. Steve could not. This is not in any way the same situation. You have alot to offer to your marriage now, it just comes in different ways. I hope you are not making Larry's decision for him (in a subconcious way). You need to recognize that you still deserve to be loved and respected and that the change is in your purpose, not in your person. Whatever you decide, you have friends thinking of you and cheering you on. Laura

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