Any Decent Pain Groups?

[xoxoxoBruce]

You need Michael Jacksons oxygen bed.

[TheMercenary]

Originally Posted by rkzenrage

Surgery is very dangerous for me, and my issue is not mainly obstructive apnea (and mine is my nose, been broken a few times, had surgery on it once).
Mine is a nervous system issue, I stop breathing in my sleep, hypoxia.

Understand. Neurogenic. Difficult case.

SO on edge today.
I'm fucking SICK of being in pain all the time.
The weather has been bad EVERY DAY for a month, without break and I am getting worse every day.
I am always in pain and always have been and it seems like it has been coming to a head and wearing on me until today.
Every muscle, movement, breath, moment hurts, just hurts.
I don't know what to do.
I'm really at my wit's end. I feel like a failure as a father for feeling this way.
Weak.
Since our insurance has changed I have been unable to go to therapy and though all I did was go and talk (he is not invasive at all, just encouraging. Mostly I talk about stuff, what I am trying to do and my hopes) it seems like since them pressure has been building...
Since I have been feeling worse, since the stroke, recent heart and new kidney/bladder problems I've been avoiding talking to my family about anything as well.
There is something else I have not discussed with anyone.
Since some of the recent diagnoses my wife has become distant, she admits it, but it is hard on both of us.
I can't seem to stop thinking terrible thoughts.
I want to be the best husband and father I can but I am in so much pain... it is becoming hard to think clearly.
I know there is nothing you guys can do, but you really are my only link to the world, the only people I talk to any more in any real way.
So sorry for laying this on you....
I don't blame you if this goes ignored. There is nothing that can be done, this is my lot and I know I am still more fortunate than most in the world, I know that in my heart and try so hard to keep that in the front of my mind.
I feel so weak right now for letting this get to me, but it hurts SO MUCH I am overwhelmed and so lonely sometimes, even with my family here because they are afraid to even mention it now. I don't blame them, not at ALL.
We watched my grandmother die for 13 years and I know that they feel this again.
No mother and father should have to go through what my parents are going through and then have the added burden of having to talk to me about it.
I am lost.

[xoxoxoBruce]

There is nothing weak about accepting reality and dealing with it the best way you can.
I imagine you're trying to, "grin and bear it", but be careful not to shut out your wife in the process. She's your best friend and closest ally.

I think the opposite is happening. She is becoming very distant, emotionally.
I do try to do my best to be strong and ... I don't know how to describe it, but not put this on those around me.
It is hard enough on them.
Thank you for your kindness.

[Uisge Beatha]

First off, rk, don't feel sorry for "laying this on us." Compassion doesn't need that, and I, for one, feel more than compassion. I actually admire you for working so hard and dealing with so much. I truly can't imagine what I would do were I in your shoes. I hope you can also get past feeling weak; if your situation didn't get to you, you couldn't be human.

I really do wish I could do something to help you. I can't stand seeing anyone or anything in pain. This case goes beyond that general rule, though. You have brought smiles to my face and given me interesting points and viewpoints to ponder; I am a bit better person for having had even this much interaction with you. I hope you can find some help; my prayers are with you.

Thank you for the compliment.
I just wish I could explain it.
Nothing has really changed... I just don't feel my normal ability to deal with the pain in the last few days.
My jaw and the area around my ribs swells so it hurts when I breath, eat/swallow and my ears hurt a lot (among other things) but these are wearing on me and making me nuts.
They are not even, remotely, the things that hurt the worst on me.
I feel like I don't know what to do.

[DanaC]

rage, I'm glad you felt you could talk to us about it at least. But, you know, bruce is right, be careful not to protect your wife too much from this.

You refer to 13 years of watching your grandma die. This is not what is happening. Your family are watching you live. They are watching you live with pain, but live nonetheless.

If you ever feel that sharing with a 'stranger' might help, PM me. (or indeed any of the dwellars, I suspect)

[DanaC]

that sounds horribly wearing rk, you must be ready to bounce off the walls with that.

[Uisge Beatha]

I think I at least understand how some of the less painful things can wear on you, rk. Damn, that is a bitch. Your frustration over it all must only add to the problem. I wish I could provide some answers instead of just stating the obvious. All I can do (at least for now) is listen, but I certainly am glad to do that much.

Honestly... I want to... but, I don't know what to say any more.
I hurt, I hurt, I hurtIhurt?.... there are other things I am afraid to give voice to.
Perhaps I will, but not now.
Thank you so much for the offer, I may.

[xoxoxoBruce]

Originally Posted by rkzenrage

I think the opposite is happening. She is becoming very distant, emotionally.
I do try to do my best to be strong and ... I don't know how to describe it, but not put this on those around me.
It is hard enough on them.
Thank you for your kindness.

Consider this. Your wife knows you're doing your best "not to put this on those around you", and is trying to help you do just that, by avoiding the subject. Pushing herself away to make it easier for you. To you she's becoming distant. If so, that's rough on her also.

Obviously I don't know shit, just running it by you for consideration.
but you might try opening up, just a little, and see if she shows signs of wanting to go into it deeper.

It's a fool, that plays it cool, by making his life a little colder.

I am very open... she will not discuss anything with me now.
This is VERY hard on her. I am really the only person she ever trusted completely.
Long story, but, she was abused by her father, had a difficult relationship with her mother, I was there for her when she had ovarian problems and a brain/pituitary tumor, she is healthy now after all of that and we are best friends as well as married. She did not trust me enough to want kids until we were together 13 years. Right after that is when we found out about my back... then every thing else, a little at a time.
I think once my liver, heart and kidneys started to have problems was when she started to pull away, the stroke was the last straw... she is really scared.

[limey]

With friends and relatives who are living through long term illness or pain I have always been guided by them in whether or not it is a subject of conversation - sometimes they'd want to talk about it, other times they'd want to talk about anything but ... I imagine your wife might feel the same way, as Bruce has suggested, and is avoiding the subject for your sake because you are avoiding it for her sake.
It sounds to me as though you have a very strong relationship, and it will be hard for her to face up to major changes in your shared life; are you able to help her come to terms with those changes ahead of time by talking to her and helping her to plan ahead?
And there is no shame in feeling scared - it's a brave man who can confess that he is scared and needs help. But surely you know that rk.
This is the only thread in the Cellar which I have tagged for new post alerts, because I want to know how things are with you, and because even if all I can do is read your posts, I want to be here for you.

Sorry I've been gone for a while. I got a lot worse and have been unable to move from my bed, and even get on-line in bed for the last few days. It is still storming here.
I am a bit better today, even had a pipe earlier.
Talked to my wife some, told her that I want her to get out with her friends from time to time and get away from this situation, get out. She agreed that we need to talk and that she needs to deal with this more openly with me.
And I have to get out too.
I used to go to my local tobacco shop from time to time, they have recliners there. It is hard for me, but something I enjoy and should do.
Financially we are going to have to finagle a bit to make these things happen, but we need to.
I think the main thing is that I am getting worse a LOT faster than she was ready to deal with, than she expected.
She misses our life, she misses who I used to be and she is going through a mourning period... that I am here, and so sick is making that even harder.
These last few days were so hard in many ways.
Finn kept trying to make me better, it was heartbreaking. I can't talk about it really. My parents are going on vacation for their anniversary and want to cancel it because of the last few days.
I don't know what they think they can do?
What I think everyone's fear is, is another stroke. I passed-out last night when I tried to take a bath. I think it scared Kan pretty bad.
I hate this so much.