Just feeling numb

[casper2636]

I started D. over 3 years ago, and wanted to share and read about everything. I got wonderful feedback and so much support. Now, I feel like I have been reading too much of my own personal feelings. The struggles and the angst. The hate and the gratitude, the love and the hate; when to speak up ,and when to keep my mouth shut. I guess I just don't  know how to feel any more. I guess I'm just tired of feeling. I'm in pause, just waiting for a kidney. There is no action I can take. I try to take the positive approach, but the fight seems so counter productive. People around me are dying, 4 in the last 3 months. I'm sorry for them. How can I drag myself out of the mud? How do you keep going?I know there is life out there, how do you regain it?

[gaelicdevil]

Truly for us? We are the Walking Dead...it gets slightly better with a transplant but a whole new set of problems. But I refuse the happy pills so probably best to ignore me.

[Sugarlump]

Sometimes fighting things keeps you alive, proves you are alive.
Me I've never learnt to shut up.
Hell just speak .... they take everything else away from you but not the power of speech.
Losing D friends is always difficult but I believe in fate.
Your destiny is already there waiting to unfold ...

[okarol]

Hi casper,
I was wondering how long the wait time is for a kidney in your local area. Do you know your PRA level? Is there any chance of finding a living donor?
I am more optimistic about transplants as I have seen Jenna's life greatly improved with 3 years of transplant compared to 3 years of the in-center dialysis she had. It's not perfect, but if it weren't for her taking meds every 12 hours, I could almost forget she's got CKD.
Hang in there. Sending you lots of hugs and good wishes. 

[casper2636]

No! Not better to be ignored....I want to stamp my feet and be heard!!!! Even if I have nothing to be said. I have to know I am going somewhere...I have to know I'm making progress..I'm scared, and need to know that I'm not farting in the wind by opening my mouth. I'm reading of other peoples battles, caretakers and loved ones and people themselves that are fighting for life, but what kind of life? I want to know what I'm fighting for!?

[gaelicdevil]

I guess it's what you already have that changes how we dream. If you already have kids, do you want more? Do you want the American dream? It's the little things...love, warm weather, dogs...beyond that, I am reaching. But this is thirty years for me and the last three have truly sucked.

[Sugarlump]

There are no guarantees the promise of a kidney will change your life. It might. Some people get lucky. But some don't.
Carry on stamping your feet and hollering, people will hear you.
I learnt keeping quiet just made me depressed.
You are going somewhere but cannot tell you where. Bit like a magical mystery tour.
Destination maybe a surprise.
Finding your own personal way of coping is the next stage...

[casper2636]

Gaelic,
Yes, I have been dreaming. No, I never have been blessed with children. I wish I had. That would make this "experience" That much different. I'm doing it for me and my family. I can't let them down.I've got to fight, but to know what I'm fighting for would be a gift. As you said, a transplant has a whole handful of catches....for better or worse???Whose to say?

[gaelicdevil]

I would like to know that I can go somewhere again. Not be tied to that damn Robot(the sucker of life). Still be able to go back to Ireland and have a pint in the Local before I say my farewells. That's why I want the kidney. Small dreams I guess.

[okarol]

I am not the patient so I obviously cannot know what you're going through. But I have watched someone I love struggle and that only inspires me to fight more. If you want a transplant (not everyone does) then you can take actions to improve your options.

My daughter began dialysis at 18 years old. We started out waiting, as we were told. But the future looked bleak. Ten year wait in Los Angeles? - We got her multi-listed in another area. Still no calls? OK so we find a living donor. No family or friends match? - find a stranger donor. Hospital won't accept strangers? Change hospitals.

It's not easy. And yes, I am not the sick one, so I have more energy and drive. And I know Jenna was too overwhelmed and fatigued to do much, but she kept moving forward and her faith kept me moving forward.

No guarantees. That's true. But keep speaking up. Don't give up.

[casper2636]

Never small, because dreams can snowball. Watch out, 'cause you might get what you wish for!!God bless.

[gaelicdevil]

The funny bit is I would gladly give it to someone half my age so they could have a better life but I'll be damned if  I let it go to someone older than me.

[MooseMom]

"What are we fighting for?"  That's a good question, and it's asked by many, if not most, people, even those who are not affected by kidney disease.  It seems that lately, I've come across so many people who have chronic diseases.  My best friend from high school has AIDS.  I don't think he is in paid employment because of his health, but he is a playwright and volunteers in several theater groups.  He's been HIV positive since at least 1985, and back in those days, such people rarely survived.  I have another acquaintance who is only in her thirties but has MS.  She just had a baby, and she is trying to stay on in her job, but the stress of her life is causing her health to decline.  In her case, fighting causes her to get sicker.

If you didn't have ESRD, what would you be doing in your life?  What would you be fighting for?  I know I am guilty of thrashing around, trying to find some purpose in life.  There have been volunteering opportunities that I have passed on because I am afraid of making commitments that my declining health may not let me honor.

I'm not even on D yet, and already I am tired of fighting.  Maybe the answer is to stop fighting and start finding another way of coping.  Fighting is exhausting.  I don't have any answers, but I do know that I don't want to die yet. 

Casper, that you have stopped feeling might give you a clue as to what to do next.  Maybe you should just do nothing for a while.  I find that I go through periods of such high stress and anxiety, and then I just exhaust myself and become numb like you have.  I think that numbness may well be your mind's way of telling you it needs time to rest.  In people who have sustained massive brain trauma, they are sometimes purposely put into a coma so that the brain can have a chance to heal without having to faff about with ordering arms and legs to move around.  Maybe your mind wants to be comatose for a while so that it can recharge and not faff about with all of the feelings flying around.

[Sugarlump]

Hi Moosey
You've come out to play again!
Daybreak here...rough night 

[gaelicdevil]

And it helps to know you have some support even if we are miles apart. All you have to do is find me. I will help if I can.

[MooseMom]

Hi Moosey
You've come out tp play again!
Daygreak here...rough night 

Oh dear...why has it been a rough night?  That sounds ominous.

[Sugarlump]

Just the bloody steroids normally make me so high and euphoric but occasionally they flip and send me plunging down into the abyss.
Been up most of night, drinking vodka and talking nonsense.
They're talking about taking me back in to hosp to play around with my meds not what I want. Dangerous game that for sidney the kidney.
What about you, hows your day? 

[casper2636]

MM, I'm so scared of not feeling, of giving myself a break, mentally. I want to work, and disability SS shames me! I can't help feeling the way I feel. I want to make "my dash" in life count. How can I physically do it, if I can't depend on my body to do it. I, too, am afraid to commit, if my unpredictable body won't do what it is told?

[MooseMom]

MM, I'm so scared of not feeling, of giving myself a break, mentally. I want to work, and disability SS shames me! I can't help feeling the way I feel. I want to make "my dash" in life count. How can I physically do it, if I can't depend on my body to do it. I, too, am afraid to commit, if my unpredictable body won't do what it is told?

Oh gosh, I really do struggle with the same thing.  You and I need to find a way to give ourselves a mental and psychological break without resorting to going numb.  It's not about stopping feeling, rather, it's about feeling something different from the usual fear and despair.  I can't claim to know how to do that.  My husband says I should spend more time distracting myself, ie reading, just doing pleasant things.  I get mad because that sounds so simplistic.  How in the world can I find pleasure in simple things WHEN I HAVE AN INCURABLE DISEASE?  But maybe he is right.

There is a lot of talk in the renal community about the very topic you've brought up.  When people first started going on dialysis, a panel of "experts" chose which patients were candidates.  An appeal was made to Congress to have dialysis paid for by Medicare, the rationale being that if this treatment was paid for, then people could go back to work and become productive again!  THE WHOLE POINT OF DIALYSIS WAS TO REHABILITATE A PATIENT AND RETURN HIM/HER TO WORK.  But the big dialysis companies saw a chance to make a profit, and the game changed.  Most people did D at home.  But that changed, too, and now, dialysis keeps people handicapped and disabled.  A lot of people are working hard to go back to the future, ie, to demand better dialysis for people just like you who are sick of having their life-saving treatment result in disability so that you can return to a reasonably normal life and work if you so choose.

Have you spoken with a social worker or your neph to tell them that you want to return to work?  Is that your goal in all of this?  Is that what you are fighting for?

[MooseMom]

Just the bloody steroids normally make me so high and euphoric but occasionally they flip and send me plunging down into the abyss.
Been up most of night, drinking vodka and talking nonsense.
They're talking about taking me back in to hosp to play around with my meds not what I want. Dangerous game that for sidney the kidney.
What about you, hows your day? 

Let's go talk nonsense on the "Last post loves IHD most" thread, or whatever it's called.

[Sugarlump]

OK see u there 

[casper2636]

No, No, No....Drinking is not the answer!!! It just makes the situation worse!The government is wrong because the more we work, the less they help us! They penalize us for trying to be normal and functioning.I can't depend on my body, and that makes me not to wanting to try to function, to commit.And even if I got a transplant, I have three months to find a job!If not, I'm shit out of luck...take a number behind all of these abled body people!I know I'm fighting for something better than to be turned away...I'm smart and can give any business a good run for their money!

[MooseMom]

What kind of work did you do before you started D?  Would you want to go back to that same sort of occupation?

[gaelicdevil]

Yes...the real American dream. Kill the poor.

[MooseMom]

Yes...the real American dream. Kill the poor.

Yeah, they're too expensive and damned inconvenient.