Coping skills - what positive coping skills have helped you?

[Razman]

 I am curious on how others have faced kidney disease.  Where did you find support?  Was it nurses ,doctors, friends , family , networks?  How do you cope.  What is your advice to others.

[willowtreewren]

Support - IHD

Coping - Friends from IHD

Information - IHD.

Hmmm. Did I mention IHD?

[bevvy5]

I'm a pretty positive person naturally.  But hubby and I don't borrow trouble from the future.  It's a day at a time or you'll drive yourself crazy.

That being said, Greg was told it's "very unlikely" he'll be able to go back on PD.  It's a struggle, but we're trying to remain positive he'll beat the odds.  Short of that, we'll deal with the challenge of permanent hemo if it comes to that.

[monrein]

Friends, family, medical staff, particularly my neph, IHD of course, but frankly I've found self-talk to be one of my most crucial coping mechanisms.   I've always found it helpful to be totally frank with myself about my fears, worries, or even the more positive things like boundless optimism and unrealistic hope and then I start debating or adding different thoughts to this internal dialogue.  I usually end up feeling that a have a better perspective, by better I mean less one-sided, more balanced and I feel more in control of my thoughts about ESRD rather than feeling overwhelmed.  Crying has been useful at times but I can only do that for limited bouts of time before I get really annoyed with myself for having red stinging eyes and usually a headache.  Sometimes I just have to get dressed, go out and interact with people who are strangers, at the supermarket or a cafe or wherever in the attempt to smile and behave as "normally" as I can.   Oh yeah, exercise has been a serious sanity saver and one I can't live without.

How are YOU doing Dave?  Still holding D at bay?  And how is life as a grandad?

[dwcrawford]

I am curious on how others have faced kidney disease.  Where did you find support?  Was it nurses ,doctors, friends , family , networks?  How do you cope.  What is your advice to others.

Two of the greatest Nephrologists there could be (JJO and JJO), one great Internist (JS), one great Ihd member (ZR), one brilliant therapist from the Jewish Family Services, Houston (JM), and one loving and supporting neighbor (MW).

Advice to others:  listen to all who speak and ultimately make your own decision.  then live as best you can with as much normalicy as possible.  learn to accept criticism (still trying) and just do what you can as best you can.  a little humor  won't hurt either.

[tyefly]

Friends, family, medical staff, particularly my neph, IHD of course, but frankly I've found self-talk to be one of my most crucial coping mechanisms.   I've always found it helpful to be totally frank with myself about my fears, worries, or even the more positive things like boundless optimism and unrealistic hope and then I start debating or adding different thoughts to this internal dialogue.  I usually end up feeling that a have a better perspective, by better I mean less one-sided, more balanced and I feel more in control of my thoughts about ESRD rather than feeling overwhelmed.  Crying has been useful at times but I can only do that for limited bouts of time before I get really annoyed with myself for having red stinging eyes and usually a headache.  Sometimes I just have to get dressed, go out and interact with people who are strangers, at the supermarket or a cafe or wherever in the attempt to smile and behave as "normally" as I can.   Oh yeah, exercise has been a serious sanity saver and one I can't live without.

Very well said.....   this is how I cope as well....

[dwcrawford]

I'm interested in hearing more from Gail about self-dialogue  (mmm).  I do it too but was beginning to then it was an early indicator  of insanity.  (yes, self dialogue is applicable since I do answer myself).

[HubbysPartner]

Gosh, Dan, I thought I was only one who did that!   

IHD is great support.  I find that knowledge is power so I learn all I can so I can help my husband stay positive.  A great sense of humor helps too!

[kellyt]

I have to agree - the fine folks/friends/family at IHD.  That is IT!!!

[monrein]

I'm interested in hearing more from Gail about self-dialogue  (mmm).  I do it too but was beginning to then it was an early indicator  of insanity.  (yes, self dialogue is applicable since I do answer myself).

I actively argue with myself although frankly I'm much ruder and direct me-to-me than I am with others.  I find myself saying things like "Come on woman, that's so sappy/dumb/simplistic/...you're forgetting about xyz...well, you could do that but what exactly would that accomplish...hmm, you never really considered this new idea did you..etc on and on.  I don't usually talk out loud but do if I'm rehearsing/role-playing a real conversation/confrontion/discussion that I plan to have...in that case I'm practicing my best convincing logic or trying to make sure I won't sound too insulting. Sometimes I'm just as mean and nasty as I can be to get it out of my system so I won't do it in real life.  I play the ultra bitch then step back and consider the ugliness/futility/stress of it all and how that affects who I'd prefer to be as a person.

I also pose questions to myself then have to research the answer(s).   The internet has been terrific in this regard since as a kid I drove adults pretty buggy with questions they found just plain wierd or to which they gave really simplified answers that I knew were idiotic and evasive because they deemed me too young to understand.  I remember thinking that they weren't particularly curious or bright.  In some cases I was right, in others I learned later that I'd caused them to think harder.
 I 've also comforted myself by stroking my face or arms and saying soothing calming things as one would to another person in physical or emotional pain and I talk to myself about being less afraid of physical pain by allowing myself to really feel it and breathe into it as if I could massage it.   

You know what, come to think of it, maybe I am a tad odd.

[Razman]

  Keep them coming.  I always thought that only patients really understand each other but why is that?   If others hear that someone has cancer or leukemia they all listen and are worried but you say ESRD and its no big deal.    How else do you handle the down times?

[kellyt]

When friends and family ask me how I'm doing I have come to realize that it's just a question.  They really don't want to know, so I don't go into speifics.  I give'em the same ole "Great.  How about you?"  And they NEVER skip a beat and go straight into their lives, problems, worries, etc.  In the beginning I would tell them how I was doing, feeling, etc. and they would just look at me with a blank stare and then say something like "Well, you'll be fine.  It will all work out.".   Whatever.  They have no clue and worse they have no desire to know more.

Paris and I talked a little about this the other night.  She has been posting donor specifics and such on Facebook and I have occasionally done the same.  The ONLY people that responde are our friends from IHD.  Others just ignore the post all together.  Ignorance is truly bliss, I guess.

So I guess I "cope" with just keeping it to myself and come here to talk, vent and learn.

[Sunny]

Thank God for my husband of 21 years. He has been my Rock through it all these last 9 years of ESRD.
I also have both my parents and both my husband's parents still alive and they are very supportive. In addition, I have been blessed with five sisters who are of help, two of whom are truly courageous in their assistance to me. In other words, my family is my major support group. Other than that, I live in a small County and I have found NO support group for people like me so that's where IHD.COM comes in. Thank-you IHD!
Like Monrein, I do a lot of "self talk" to get me through rough spots along with meditation. I wish I had some sort of chronic disease support group, but alas, it does not exist and I have tried. I have gone to see a therapist on occasion, but found them to be rather useless. Antidepressants come in handy sometimes, but are not very effective either so I only take them when I'm really down in the dumps. The most important thing is to learn to live with ESRD and accept it's limitations.

[dwcrawford]

When friends and family ask me how I'm doing I have come to realize that it's just a question.  They really don't want to know, so I don't go into speifics.

  If others hear that someone has cancer or leukemia they all listen and are worried but you say ESRD and its no big deal.   

I think (as Gail talks to herself often I post in here talking to myself.  usually I'm using it as a testing place to see if that is how I feel.  this is one of those times.)  I think that I want people to not consider my kidney failure so serious.  I don't want to be thought of as being sick or needing extra attention or consideration.  I do.  And occassionly it gets to me and I let it out even going back to my college days of severe clinical depression.  Some wonderful people on IHD (P, W, and M) will then get concerned and offer help which then frightens the hell out of me.  Why did I ever let it be known?  I want them to think of me as a vital, funny human being concerned primarily with my friends.

Oh those people I mentioned as being my suupport system initially -- they know.  They also know how I want to appear to be.  Appearance is vitally important to me.  But when others not so interested ask how I'm doing, just like Kelly, I'll say something like "I'm good.  How are you?"  The sit back and listen.  In  this environment (IHD) almost everyone has things worse than I do.  Why should I complain?  Yet, I let my guard down at times and I do.  Sorry.

Another thing I do is remember.... Damn Dan, you've had such a wonderful and charmed life to this point.  Quit your bitching and face up to life finally.

I guess it is easier if you let people believe you are really a goofy old jackass than to be vulnerable.
So, how long can I cope?  I question it almost daily (or at least ever M/W/F).  And what does the future hold for  me?  Obviously I won't live to die driving home from a hot party in my brand new lamborgini.  That's my first choice. 

So how do I cope?  One day at a time .. and I'll do better now that Gail has taught the the proper way to talk to myself.

Yes, I am jealous of all you with family that care for you.  Can I be both jealous for myself and happy for you at the same time?

[jbeany]

A warped sense of humor helps me cope. 

[galvo]

Oh Kelly! How much I agree with you and, amazingly, with Mr Crawford!!! The glazed-over look I have received from so-called friends, when I feel the need to talk about the disease and/or dialysis, has shown me how little real interest they have. So the response to all enquiries is now "Great, thanks", accompanied by an insincere smile. I am convinced that the dialysis nurses, with their varying levels of experise, could not give a stuff about patient well-being.

Having no family, that leaves you scurvy lot at IHD as my sole support.  You help me cope.

Thank You!!!!!!!!!!!!!!!!!!!

[cariad]

I don't know that I ever developed any coping skills. I do love humor, even in the most inappropriate places. I guess I use self-talk, but I don't imagine I'm very good at it, as I'm usually trying to turn my internal chatterbox off. Talking to others. Volunteering in a place where I am guaranteed to confront painful emotions (of strangers) every shift is actually awesome. Doing anything that distracts me is invaluable.

Kidney failure just is and always has been present, to some extent, in my life. It's not something I have given a lot of thought to until the last few years. I am reading all the other responses with keen interest. Great question.

[RichardMEL]

My dialysis nurses are THE BEST and they really help to make a bad situation better. They all care (and I know it is genuine - certainly a core 3 or 4 go out of their way and we have a special friendship that is more than just nurse/patient). The thing is they treat us like humans, they care with us as well as for us. It's not "us and them" it's just all of us. They see some of us more than some of their families, and for us it is a bit of a community thing. After 3.5 years I count some of them as dear friends. They help a lot.

IHD helps a lot too. Specially the women of IHD!!! Thinking about all of you lovlies does wonders for me (not so good for my blood pressure though !!!  )

A sense of humour definitely helps. Sometimes I reckon if you can't laugh at it all then there's not much point. I'd rather try and be more positive about things, and find a good side to everything bad rather than focusing on the bad stuff.. I'd hate to fall into a well of depression - I know being there won't help me at ALL, and hopefully focusing on positive things will help me that little bit when/if I get the call.

Yes, my family is supportive but as others here have noted it's sort of different. They don't really understand as much as they try, and they can't really know. That doesn't mean I'm saying they're bad, or hopeless or anything like that, but it's just different. The same with most friends... and frankly there are some friends I just don't want to spend all my time going on about kidney stuff. It's not their concern. I want some of my mates to be mates because we crap on about football or cricket or checking out girls or whatever.. the normal stuff.

The other thing is that I try to not let my disease dominate my life. Yes, I have my 3x/week treatment.. but when I leave there.. well that's that. I want to focus on good things.. like my work, my mates at work, my cat, chatting up unsuspecting girls on the internet (giggity!), my football team and the like.. you know.. normal things.

I find all of these things, in their own way, help me cope with things.

[dwcrawford]

This was absolutely in appropriate to past here.  People were looking for coping techniques and didn't need to hear my whining.  I am sorry.
Dan

[Hanify]

The fern will survive Dan - it'll just be cold for a bit.  Just like us.  We have to go through the down times and sometimes it's just a case of waiting it out.  I have enormous support from my family and friends - and IHD too.  Best of both worlds.  I conciously try to stay positive about my situation - being negative and focussing on the negatives does not make the situation easier believe me!But i have down days like anyone else.  If my down days turned into down weeks I would seek proffessional help - so far, I haven't needed to.  I still feel like a really lucky person - I have a lovely 'whanau' (NZ Maori word for wider family) and many many things in my like are great.

[dwcrawford]

But Hanify, if it survives then in   my  lifetime it will never reach the glory that it had a week ago.  I'm so glad for some of the people who have supportive families.  But I don't.

[RichardMEL]

I'm no Freud but I have the impression that the fern in a way is representative of Dan's overall situation. Doing so well for 40+ years and then bang... it's crippled - perhaps terminally so (though I imagine it has survived winters before) so in a way Dan is identifying with what's happened as it relates to his own life. I can see that.

What's that saying about things always looking darkest just before the dawn? Also winter is a low time for many people as it is. Does it help you to know it's forecast to hit like 110F or something here today??? Send that fern down to me....

Dan hang in there. Is it worth it? Of course it is. The world would be a darker place without you in it. Your family and friends AND your faithful fern would all miss you terribly.

Yes labs are a drag, fasting is a drag, driving in the snow and putting up with dialysis is a drag... but that's part of life. Admit it you'd miss us all too!!

[paris]

Hanify, you have a wonderful spirit!  Sassy, fun, quick  and full of a bright hope that shines bright.   Keep shining and filling us with hope   

Dan, winter is the hardest season.  Holidays, family or lack of family, seeing what the year threw at us.  But, in a couple of months SPRING! New beginnings and new hope.  That is how I have to see it.    I have a family member that I would love to gift wrap and send to you!!  You would set her straight!  She is a piece of work and I know you could go toe to toe with her.  You can't pick family, but you can pick friends---can I pick you?   

Kelly, my "friend" has sent me more emails scolding me for pushing everyone away and not wanting to hear about other's problems.  But, I did have another friend tell me she brought up donation at dinner one night. Her husband has always been against it, but after hearing what I had shared with her, he now sees it differently.  So, someone heard me!  Thanks for listening to my woes the other night   

[monrein]

Staghorn ferns are so beautiful and a glorious specimen is a thing to behold and care for.  This is dear to me as my Dad was a landscaper and nursery owner who had an amazing one that took up a huge corner in his screened porch in Florida.  My sister "inherited" it and it continued to flourish in her home on a small island in the Indian River.  When they moved, she felt it best to leave it there as she didn't want to damage it in any way.  We all felt attached to this staghorn and said goodbye while feeling grateful for the long time that it was a part of the family.  I don't know what has become of it in the interim.  I get very attached to my plants but I also know that my custody of them is likely temporary and somehow that serves to heighten my appreciation of them.  My apple tree, now very old and suffering from fire blight may not be here 5 years from now and I struggle with the thought that replacing such a specimen is of course impossible.  I'm mentally researching a replacement but have settled on nothing as yet.

Dan, I hope that the staghorn will only suffer dieback which is tragic but not as bad as losing it altogether.  Your mission will then be to nurture it and coax it back even if you personally never see it regain it's former splendour.   Dan, I so wish that you too had not had to suffer so much in the last couple of years and while you, like the fern, may not be "restored" to your former pre-dialysis self, you still have much to give and receive both here on IHD and also in your neighbourhood, your clinic community and in fact wherever you are.  Of course the fern situation has thrown you, it's been a source of beauty and pleasure through some pretty dark days and now you must recall all the memories and hold them within to sustain you and keep you moving forward.  Some forty years you've been taking care of it and clearly it's been giving back to you too.  Please relax this evening, try to get a good night's sleep and I'll be thinking of you and the staghorn tomorrow as you get through the yucky hurdle of labs and D.   

[kitkatz]

Now I know someone mentioned IHD.com as a great support network!

I find the medical establishment to not be there to be supportive to patients.  It is a diagnosis to them and if it interesting they might follow up with you later.

I think you have to establish sound support system with in your own family and friends and if that does not work get online and find a support group there.

ESRD is a vicious, uncompromising disease to have to deal with. The more support you gather around yourself the better you are going to cope with it.