Author Topic: Effects on Marriage  (Read 10243 times)

CAT1962

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Re: Effects on Marriage
« Reply #30 on: January 27, 2011, 09:34:55 AM »
NancyLee, 1962 is the yr I was BORN!  :o...LOL....EDITED: But, HEY....I'll take 1982, also...hehe
« Last Edit: January 27, 2011, 10:09:31 AM by CAT1962 »

katfer

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Re: Effects on Marriage
« Reply #31 on: January 27, 2011, 10:02:39 AM »
I too have the very same things happening.  My husband is doing what he can to understand but when I bring up things about my appointments, meds or the way I feel I can see it in his looks and body language that he doesn't want to hear it.  I told him the other day I just need him to hold me and let me cry it out.  I have been told by several people that chronic illness is better handled in counseling or group sessions.  That way we have an outlet to talk it out where people can understand and relate to us.  Then we are more likely not to bring up our problems so much to family and friends.  I can't blame them, they just don't want to hear it after awhile cause they can't relate or do anything about it.  It seems like such a downer to hear this all the time but on the other hand this is our world in which we are living.  We need somewhere to go to cope.  I've decided I'm going to research and find  somewhere to go.  Keep trying to think positive and if your husband is interested in what's happening he will ask you.  Take care!
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CAT1962

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Re: Effects on Marriage
« Reply #32 on: January 27, 2011, 10:10:35 AM »
There is so littel known really about this SjS garbage. I wish I could find a support group close to me. The closest is about 25 miles from me...

quietdynamics

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Re: Effects on Marriage
« Reply #33 on: January 27, 2011, 11:10:17 AM »
Irish...That is so funny...lol :D
"My hubby is very supportive and understanding. He doesn't even bug me about my strange insomnia and sleeping habits. He always asks me where I am going to sleep tonight."
I am so heat intolerant...that I want to seek out cool places. Sometimes I dread laying down to go to sleep. When I lay down I get so hot and nauseous. I stick out limb like "cool" air seeking tendrils.  I even prefer to eat and drink things that are cold and soothing.
Alex has autoimmune issues (diabetes, neuropathy, heart disease) and he lost his job 3 years ago, when pharma downsized, at his age, and level of mastership companies do not want to hire. The cost of Cobra was unbelievable.
He asked me to marry him just before losing his job and when I was at the precipice of this fall from well being (still believing Dr. who said "well you have so much on your plate ...of course you are tired. My 14 y/o daughter was in the hospital) So I decided and told him that I would not marry him (on paper) and financially endanger all he had worked for ...I was afraid medical bills would go from a me account to a we account. Does that make sense?
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laurajohn

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Re: Effects on Marriage
« Reply #34 on: January 27, 2011, 11:57:44 AM »
Wow!  I don't know whether to laugh or cry!   

Thanks guys!!!!  IF I CAN EVER GET MY DIAGNOSIS a support group is going to be a must!  This has been most helpful!

irish

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Re: Effects on Marriage
« Reply #35 on: January 27, 2011, 01:53:03 PM »
I think that if we would contact the Sjogrens Foundation we could get help in setting up a support group ourselves. I think that there are probably some hoops to go through, but if we could find another person to help us it would be easier.

In my town there is only a M.S. Support group and I have been there a couple of times. It meets monthly at the hospital and is run by a gal that I have known for years. She says that anyone with a chronic disease is welcome to come.

I have also thought about going to a "caretakers" group. This is a group in town for people who care for an ill spouse. Since I do it all of the time at different levels of care I figured I must qualify. There is no way my hubby would go as he would also qualify as he has had to take care of me too.

I also have been wanting to go to the diabetic inservice that is held every other month at the hospital. They have doctors come in and talk, etc. Anyway, I don't know about the rest of you but it seems like whenever I plan to go to something and really want to go I end up sick. The other thing is that many of the meetings end up when I am gone for my infusion.

I think that it was very interesting that someone (excuse me I forgot who) said that chronically ill people need to get out and vent with people other than their own family/spouse, etc. This really does make sense. I have been saying for a long time that this site has saved many marriages as it defuses our frustration by allowing us to vent with others who understand.

I know that it is really hard to be objective with our spouses. We sit and stew and think bad things about them because they "don't pay attention to us or understand us" etc and the thoughts and feelings go on and on. I have been at that point this fall and early winter and I think it is part of burnout from chronic illness.

We really need to get out and away from our disease and how in the heck do we do that. We don't have the energy, souses have to work and the money issue is a very important one also. We are all financially strapped from being sick. I am on my hubbies trail to think of something we can do that would have nothing to do with the medical world.

This is pathetic, but true. When we drove to the cities last week for my appt I was thinking about how we could drive any direction and find a clinic/hospital/Imaging center that one or both of us had gone to. I had hardly ever gone to the cities and now I am learning the roads and even starting to know where the stores are in many different suburbs. I have been to Walmarts in many counties in Minnesota. Pathetic way to have spent the past 20 years. My doctors even run in the same circles. No wonder we are all frustrated. We see more of our doctors than we do our friends.

Can anyone please think of something inexpensive that we could do with our spouse that would not poop us out and would help us get some relief from this daily insult!!! Thanks to all of you. Irish ;D

dainbramage

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Re: Effects on Marriage
« Reply #36 on: January 27, 2011, 02:47:21 PM »
Thank you mews, I appreciate all of you for letting me vent. I think it helps me not be so angry. I thank all of you, but once again my son needs me...he is bleeding again and he was crying. He is only 10 years old and he thought that all he went thru would help and it did not. So now we need to go back to the hospital. He has missed so many days from school, but he bleeds so much that he can't stay there.
I called my husband and he will take him to the doctor, but of course I am the mother and I will be worried if I am not there. Maybe it is controlling, but I feel my husband does not give me all the info the doctors tell him.
Well at least we will have to talk to each other for the next few days..My syndrome is in the closet for a while until my son is better.

meow

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Re: Effects on Marriage
« Reply #37 on: January 27, 2011, 03:11:56 PM »
My husband is oblivious, mostly because my symptoms are pretty mild, compared to what some of you are going through. We talked seriously when the doc was running tests, and I was scared it would be lupus. He is very sensible, and just said, "You know it's probably not that, and if it is, we'll deal with it."  I explained it to him when I got the dx, and said "This is why I've been so tired and achy," and told him I'd be taking a low dose of malaria medicine to suppress it. He nodded and sai, "OK," and we haven't talked about it since. At all. If I'm falling asleep at 6pm, he'll tell me, "You're passing out." No sh*t?
I don't mind it, as long as the symptoms are mild.
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

mews

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Re: Effects on Marriage
« Reply #38 on: January 27, 2011, 04:13:20 PM »
Ya Know dainbramage they used to tell me, God never gives you more than you can handle... I'm not so sure I believe that statement!!!

Stay strong...and stay well!!!

Mary

Joe S.

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Re: Effects on Marriage
« Reply #39 on: January 27, 2011, 05:38:55 PM »
I thought I had posted to this. After 38+ years of marriage I am now the reason that anything goes wrong and the blame drops on me. I have seen this before in many other relationships. It caught me off guard to see it in my own this year. But I supposed that having to quit work may be part of it. I have no response to this blame game. 1. I do not want to play and 2. My brain moves too slow to yell, scream and argue. 3. I know that she is very frustrated and also in pain.
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dainbramage

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Re: Effects on Marriage
« Reply #40 on: January 27, 2011, 06:09:14 PM »
You are right mews...that is what my boss said to me one day after my son was diagnosed 10 years ago, after which I believe I was having a meltdown, GOD NEVER GIVES YOU MORE THAN YOU CAN HANDLE, I said well I guess God has a good sense of humor because I am going to end up in the psych ward.
End of last year sucked and beginning of this year sucks, OK what now?

quietdynamics

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Re: Effects on Marriage
« Reply #41 on: January 27, 2011, 07:07:21 PM »
You are right mews...that is what my boss said to me one day after my son was diagnosed 10 years ago, after which I believe I was having a meltdown, GOD NEVER GIVES YOU MORE THAN YOU CAN HANDLE, I said well I guess God has a good sense of humor because I am going to end up in the psych ward.
End of last year sucked and beginning of this year sucks, OK what now?

I want a refund!!!
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

ynevar

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Re: Effects on Marriage
« Reply #42 on: January 27, 2011, 08:42:16 PM »
Feeling lost and alone, I reach out to the one I love the most.
No one seems to know how to connect with me anymore and it's more convenient to be busy or distant.
The pain rages on, day by day, and I push my love further away.
So needed by my three, I cannot bear to leave, yet I do not know how to stay.
Make some friends, get a hobby, go socialize you say.
It sounds great, but think of it this way...

"Be my friend...
I hurt every day, both my body and my heart.
My life is filled with "used to be-s" and now my joints feel full of broken glass.
Tired and fatigued, always too hot or too cold.
Some days it hurts to wash my hair or make a simple meal."

 
Tell me, where is the appeal?
Scared to put myself out there when the ones who know my heart don't reach for it anymore.

dainbramage

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Re: Effects on Marriage
« Reply #43 on: January 28, 2011, 03:41:53 AM »
quietdynamics...I called uncle so many times and it has not worked.
ynevar..do you mind if I keep what you wrote? That was so nice. :)

Bobbie

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Re: Effects on Marriage
« Reply #44 on: January 28, 2011, 05:10:55 AM »
Dear Ynevar,

That was beautifully stated and how true it is.......

Take care,  Bobbie
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