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Author Topic: Different coping styles and random melt downs  (Read 4629 times)
natnnnat
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« on: June 22, 2011, 06:51:40 PM »

I've been messy lately about Gregory because he has a brand new diagnosis (CMV, see other threads).  I was already miserable anyway, because after the 6 months we've had I've finally had a chance to relax and get worried.  When the sh*t is hitting the fan I do stuff, and worry about the emotional stuff later.  Now is "later".  We've had major illness, we've had death, its all been big.  So now I've been crying because one day he will die.  Yeah I know, we all will, but they are so vulnerable, these renal boys.  And we really have very different coping styles, which I think doesnt help much:  he wants to live life, and not dwell on worrying details, whereas I try to get my head around the detail, and understand, so that I can plan, and maybe avoid danger, that kind of thing.  So I had a big barney with him two nights ago because he said I should trust the doctors and stop worrying. He didn't know anything about what CMV was and didn't seem to care, and I was full of what I found online, which all sounded... terrifying. As he put it, I "squeaked the house down" because I was worried.  Full of my righteous fury, I sat down at my computer and opened an email from an Aussie renal group.  The email just said "big hugs".  I burst into tears.  Gregory fretted and agreed to let me come to the doctor with him next Monday.  I have promised to behave at the doctors.  And so I get my way, but will my way worry Gregory?  When he worries, he REALLY worries.  Now I'm worrying about whether my worrying will make Gregory worry and then he'll worry too much and get depressed...  When I worry, I convince myself that I can do things, you see, whereas when he worries, he feels powerless and it gets him down.

Its just hard sometimes, that's all.  I'm calmer now because I found others here at IHD in old threads who are alright with CMV, and I have a strategy now about it (keep him healthy and monitor).  But sometimes its really scary and frightening.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #1 on: June 22, 2011, 07:04:50 PM »

I hope you don't mind me posting on your thread; I am not the caregiver in my own renal hell, but I can identify with your coping strategy, and maybe I can help.

Everyone has their own way of coping, and your way is just as valid as Gregory's.  My husband is more like your Gregory; I worry about the details, and he does not.  Sometimes that makes me really mad, but then I realize that it doesn't matter HOW he copes, it just matters that he copes at all.

I know my husband thinks I worry too much, and sometimes he may be right, but I have explained to him that there is such a thing as "purposeful worrying."  "Purposeful worrying" can spur you into becoming educated and thus becoming prepared, and being prepared brings a lot of solace.  Worrying over things you can never do anything about is not "purposeful worrying", but "purposeful worrying" about which modality is best or how to learn to self-cannulate or what to expect with CMV results in fewer bad surprises along the way.

If worrying results in inertia or paralysis, then that's not good.  That serves no purpose.

Apparently, worrying for you serves a different purpose than it does for Gregory; there is no sin in that.  I think the trick might be to convince Gregory that you are not worried but that, rather, you are just making sure you have all the information so that you can relax and know that you've covered all the bases.

(Really, you two sound just like me and my husband...it's spooky!)

But you see?  You got worried about CMV, and that made you research it, and that led you to forming a strategy and THAT helped ease your worry.  Perfectly valid coping mechanism.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
natnnnat
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« Reply #2 on: June 22, 2011, 10:55:38 PM »

You can post on my thread any day MM :-)  I like the way you put things.  Gradually I'll get better at being able to talk through ideas with Gregory, which is part of my coping strategy, without setting off his worry programs, which are easily triggered.  He's been through a hell of a lot.  Actually what might be a better idea is if I talk through my ideas with you and Paris and Chris and everyone here, and then Gregory can watch his tv and play on his computer, without having to walk me through Renal 101.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #3 on: June 23, 2011, 12:11:06 AM »

Actually what might be a better idea is if I talk through my ideas with you and Paris and Chris and everyone here, and then Gregory can watch his tv and play on his computer, without having to walk me through Renal 101.

Well you know, that's what we're here for.  You can come to IHD and "practice" on us.  That way, we can perhaps ease your anxiety levels before you approach Gregory with whatever it is that is worrying you.

I can understand you wanting to protect him if he is the kind of person who, once worried, gets REALLY worried!  Ironically, that's when all of your "productive worrying" will be of such value to him.  Chances are you will have already worried that particular issue to death and will be able to provide plenty of information and support.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
natnnnat
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« Reply #4 on: June 23, 2011, 12:51:13 AM »

Chances are you will have already worried that particular issue to death and will be able to provide plenty of information and support.

Hey!  That's a good thought!  :2thumbsup;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #5 on: June 23, 2011, 01:06:37 AM »

Yep, I'm a great fan of productive worrying.  I'm a pro. ::) ::)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
billybags
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« Reply #6 on: June 23, 2011, 04:18:34 AM »

natnnnat, I fully understand what you are saying, I am the same. I ask lots of questions, I question every thing. Doctors and nephs don't seem to mind but husband takes exception to this because the docs ask me questions and not him, I am now banned from going to the Nephs with him. He said it is his illness and he will deal with it. So he can get on with it. I am having a bad day to-day as you can see.
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willowtreewren
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« Reply #7 on: June 23, 2011, 06:28:22 AM »

I simply stand in awe of how well you all are coping!  :bow;

And such wise, wise words, MooseMom!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Poppylicious
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« Reply #8 on: June 23, 2011, 02:05:42 PM »

You see, just reading this post made me start to worry.  Now I have a big nasty worrisome fist ripping my chest out and making me want to panic and cry.

Now I'm worrying about whether my worrying will make Gregory worry and then he'll worry too much and get depressed...  When I worry, I convince myself that I can do things, you see, whereas when he worries, he feels powerless and it gets him down.
I think you know that I constantly worry about this sort of thing.  We can control our own worries; they belong to us even if they're not about us.  We choose how much to worry about something, and how to turn that worry into something constructive or purposeful (or just into a panicky meltdown type of thing).  We CAN'T control how much our Renal Boys (I like that!) worry, or what they worry about.  And we don't want to add to their worries by admitting that we're worried about them (especially when they're NOT worrying.) 

But sometimes it helps to have that barney and/or show them those tears.  I don't like doing it (and never do it intentionally) but it shows that we're in it together and that we care.

I'm not sure this makes sense, but Lie to Me is about to start and I need my weekly fix of Tim Roth ...

 ;D

*BIG huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
natnnnat
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« Reply #9 on: June 23, 2011, 04:43:56 PM »

I am now banned from going to the Nephs with him. He said it is his illness and he will deal with it. So he can get on with it. I am having a bad day to-day as you can see.

Oh I recognise that situation! That was part of the row we had.  In fact it might have been me who said, you can look after own bl**dy self then, I'll just mind my own business.  And then Father in Law, who was sitting on the couch probably wishing he wasn't there (he has moved in to live with us now, and is a dear) ... he piped up and said, "well I think she should go with you.  I want her to see the doctor"
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
natnnnat
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« Reply #10 on: June 23, 2011, 04:49:40 PM »

*BIG huggles* work wonders, thanks PL.  Hopefully Tim Roth did the trick for you.    Meanwhile I think he's alright on the worrying front, he seems not too worried, relatively speaking.  I think you are right, and some of the outcome was that he perceived that he is cared about.  AND he agreed to have a muffin for afternoon tea yesterday, hopefully I can fatten him up and he wont exercise it all off.  So unfair that he is too thin, why cant I be the one forced to have muffins for afternoon tea. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
cariad
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« Reply #11 on: June 23, 2011, 06:06:32 PM »

Oh, Nat, I feel for you, sweetie! CMV is some scary stuff in renal patients. I am with you on the idle time being my downfall. If I have a full schedule, I don't wear myself out pacing over what might come to pass. I cope similarly to you - just read everything and try to make sense of it, and mostly chase those little glimmers of hope within the internet volumes available on any subject. I also have an almost compulsive need to talk through any worry I have. I don't worry about Gwyn worrying, I worry about him getting defensive, which will make me angry, which makes him angry. We are on different wavelengths most of the time these days, and that is how the cycle goes around here.

Remarkably, I've never had CMV so I cannot help on what that might mean in the renal patient. I have always read it is very common and easily fought off by the general population, but is a different animal when one is immunosuppressed. I had EBV at some point and managed to clear that and produce antibodies with no treatment, but that's not the same as CMV. Sorry, I am trying to catch up here, have they lowered Gregory's immunosuppressant doses?

I insist you have muffins for afternoon tea! ;D Worry and research and tactical conversation planning in order to do the least damage possible all burn more calories than a day at the gym. Trust me, I've lived it. Keep Gregory company and enjoy the muffins together....
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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