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.

I agree Jo, that behaviour is not typical.

Victoria, It is called Irritability !!! I get so irritable.
I was lucky to have a psychologist who also has chronic pain and could explain so many things to me about caregivers, what is healthy - what's not.
He (psy) confirmed being irritible is part of chronic pain which leads to low endorphins, which leads to depression which leads to irritability and other characteristics of the whole chronic pain syndrome.
It is a chain reaction. Like an atomic bomb going off. I think we all get burned out being in this situation day in and day out.
I am blessed having a spouse who is supportive. He doesn't get his needs mixed up with mine. He doesn't play games with me & his motives are simply to meet my needs. Not everyone can do that, which is ONE reason why there are support groups out there. I think this is one of many support groups that helps our guys (or gals) get back on track when they stress out.

Dawn, mucker and jamy, I think it is very healthy for our s/o's to go off and focus on something else. That is exactly what happens with us. He gets very quiet and does his own thing (which makes me happy) and later checks to see if I am OK or need anything. If I say I need to be alone or I'm sleeping he lets me be. That is just another way of being supportive & understanding.
It takes a high level of maturity to do that though. They must set and keep healthy boundaries. We need them to do that with us. Especially when I get a little selfish and forget the world doesn't revolve around me. And we need to set those boundaries with them too. That way we own our feelings and they don't become co-dependant carrying around our feelings for us.
I hope I'm not confusing anyone.
Vic, I also think because of your beloved's profession you have an extra challenge on your hands. He will be able to thank you for all he learns from you that will make him just that much better working with people who need kindness and understanding. Someone who knows the difference between whether or not we need a touch, a hug or just to be left alone. And that will give some meaning to why you are going through such a terrible time.
Well, that is a lot more than I've said in a long time here. I think it is because I'm emotionally invested in the person as a whole being...physically, emotionally and spiritually. All those different parts of us need to be fed and at those times when WE can't.....we need to be with someone who can.
Hope

OT
Jo, why is it I'm signed out of here every 5 - 10 minutes?

OT
Jo, why is it I'm signed out of here every 5 - 10 minutes?

***********

It seems some will have this trouble once in awhile.

try clearing your cache & cookies in your browser

do you use the "remember me" , or "keep me signed in" or save password features?
but if other people use your computer those aren't good choices -
unless you each have your own profile or user account set up on your computer so that each logs in to their own "section" and can't access another's sites, files & info.

I don't know if fiance will make the long haul - but we've been together for 14 years plus...more than most of our contemporaries our here in crazy CALI.

and he's gone from me making a couple hundred thousand to almost nothing, and loves me the same, as well as completely changing physically, and mentally, so I think he loves ME. The unwashed, moaning, pain-screwed me.

Maturity is an issue for both of us. We are children. We are grabby children. We want to pull the pinata down and forget the other kids...those erasers and penny-candies are all ours.

I think we're both codependent, too. With eachother - I cover for him, he covers for me, and somehow, it has worked, rather than imploded.

I know he gets scared when my pain and TOS is really bad. Where's his best friend? Where did his court jester go? Who will protect HIM? RUN!

I feel like Judy Garland some of the time. Without the alcohol or drug supply.

Fiance is a ringer for Alec Baldwin - but keep that under your hat...

In one of your vacation picture yrs ago on BT - I thought he looked a lot like Steven Seagal.
http://www.islandvideo.net/martial_a...s/steven_3.jpg