I have noticed that when I am at my worst pain-wise that fiance / caregiver does a nose-dive himself. Of course, this makes the pain worse. But he seems to get irritable, angry that I'm sick...it makes it so hard for me to be in so much pain, and for him to have so many questions - his need for conversation is overwhelming at these times.

Does anyone else notice this odd behavior? Is it odd? Is it a fear that I may never return from pain-land...deep, far away, suicide type pain, and high-pain...

Does anyone do anything special to avoid caregiver burnout?

My fiance ran away last Spring to French Polynesia - on a spur, by himself, in grief.

Has anyone had this? What do we do - get a Tshirt that says, "I'm in high pain, I love you more than anyone in the world, please let me be?" (I'm not kidding.) Maybe we need Pain Tshirts - med pain today, ok to talk to me...

PS: Right now is a time when I really rely on the support of this group. The pain can be mind bending.

Hi Tamara,

What I notice most about my hubby when I am at my worst is that he is of course very concerned but he is more stand off. I will tell him how bad my pain level's are and all of a sudden he has selective hearing. Then an hour later he will ask me, how are you doing?

I have noticed that when I am emotional that he chooses to also focus on something else such as his computer or a book. He use to pay attention to it more but I know it bothers him as I have seen him become teary eyed so I think it is his way of dealing with my pain and depression. This is fine because he is there for me when I am at my worse too. I hope that makes sense to you.

He has always stayed with me and hasn't left me because he couldn't deal with my pain and when I need anything he is there for me.
So I guess my hubby is the opposite he will leave me alone when I feel awful and I am the one who wants to talk at times.

Funny how were all so different... Hu...
I hope you are feeling better soon...
&
Dawn

Maybe he needs to join a caregiver support group or even some personal counseling if he'd prefer to do it on a one on one basis.

I'll be honest with you and say that I don't think that behavior is typical.

I'm guessing with any chronic high pain condition -
Some partners/family may with draw emotionally or even be resentful or angry , but still stay in the home.
I've read comments like this on our other forums.

Marc has been complaining about how I act towards him when I am in severe pain. I get angry and I yell usually at him because he's there. This is horrible.
I suppose it talks of my inability to cope. Am I alone in being like this.

Marc also sort of disengages from me when I get to the point of severe pain. I have discussed with him That I do not think I am alone in doing this. I've tried to reassure him That when we come to Southern California he will see other spouses of thoracic outlet syndrome suffers And they too will confirm That this is a normal occurrence when we are in pain. [I hope I'm not wrong] It wouldn't be the first time!!

Spousal support is so important so I bought the invisible disabilities advocate Booklet for him so he can read and understand my world In some way shape or form .

It really hurts me to hurt him. So support is paramount to all of our coping. With no spouse I realized I would be lost. I told Marc this yesterday. I told him I didn't know how I would live without him to help me. All true, painful and true.

Much love to you all,

Victoria

Hey Vic and everyone else

I know what you are saying exactly...when I am in pain I can be a B**** to be around...I can't help it...it's just when the pain gets that high I can't cope. I wouldn't want to go through this alone that's for sure but wonder sometimes how my BF puts up with it...he's a good guy! When it is at its worse and I question why I had surgery he makes me listen...tells me to take it easy...does what he can to help...I am lucky!

I guess i am lucky in the way my guy never runs or says anything but supportive things to me when i am out of control but most of the time i think he forgets that there is anything wrong with me. So i have to remind him like when he wont's me to go watch him bowling or four wheeling or help fixing the bikes. I know it hurts him that i don't well i can't do these things any more but he gets it when i remind him and he gives me a big hug and says some day when you get better we will do the things we did before or we will try. Then he tells me how much he loves me and everything well be fine because we have each other. He also jokes all the time that he is scared that when i am off the pain pills i will leave him. He is a good guy and we are very much in love and i think we work so well because we talk things out in stead of fighting or yelling at each other and we know when to shut up and back off of each other if one of us is in a bad mood.