I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: MooseMom on August 12, 2011, 10:05:04 PM
-
My husband has 4 kids, and the youngest one is leaving for college next week. This is one of those moments when you sense a change in the direction of your life; it is a bittersweet moment for him. But he is fortunate in that he is the kind of person who looks forward into the future, and he is happy that now, for the first time since we've been married, our weekends will be free and we can enjoy some much needed time together. As much as he loves his kids, they are now successfully on their way into adulthood.
But where my husband sees a more carefree future, I see a very bleak time ahead, and I just have not been able to share his enthusiasm. And to be brutally honest, it hurts a bit to see him forget that his happy future is not one in which I will get to share. He seems to forget that my future is so full of fear and uncertainty and that there is a lot of pain and sickness ahead of me that I won't be able to escape.
How do you view your future?
-
How do you view your future?
Well, MM, maybe I'm an odd duck here but (aside from political and economic fears, which look bleak indeed) my future seems just as sunny as it ever has. Maybe I'm just deluding myself as to where my disease process will take me, but right now I'm feeling better than I have in years and I have every confidence I'll be one of those who does home hemo for 30-odd years and lives a full life. Every day I wake up with plans, plans, plans and all the excitement that goes with them.
Okay, I know I'm blunt and it puts up people's backs, but I'm only EVER speaking for myself and this is IN NO WAY a judgment on how anyone else deals with things AT ALL. This is just what seems to be my basic personality and it works for me; I am not arrogant enough to think everyone should adopt my attitude so PLEASE don't take it that way.
Having said that: it seems utterly pointless to me to waste much time or effort on things I am completely powerless to change. If I'd wailed and bemoaned and grieved the loss of my kidneys from the time of diagnosis, I'd have completely wasted the last 30 years; I have no intention of wasting the next 30 years covering myself with sackcloth and ashes now that it's here. No amount of anxiety is going to get me off dialysis. No amount of fear is going to bring back my kidneys. It's done, and time to move on. I'll be damned if I'm going to eke out a life around dialysis; no, ma'am, dialysis will just have to fit itself into my life and so far I've been able to accomplish that (knock wood). Life is too damn short to waste on 'woe is me'... there's too much to DO, too much to SEE, too much to LEARN! None of that changes just because my kidneys have failed, and I think it would be a real slap in the face to the Universe to disregard all these gifts lying around because I choose to focus on my misfortune to the exclusion of everything else.
So maybe the future's not "so bright I gotta wear shades" but I'm going to live - really LIVE - every moment I've got left, whether it's 30 minutes or 30 years. That's always been my intention. Still is.
-
So maybe the future's not "so bright I gotta wear shades" but I'm going to live - really LIVE - every moment I've got left, whether it's 30 minutes or 30 years. That's always been my intention. Still is.
DD, I love that attitude. The point is to make life about living instead of making it about dying. The moment we are born we are on a journey toward death. It is all the moments in between that give meaning to this existence.
I'm with ya. But I, too, realize that this is not the path that everyone can take. I live with chronic pain from arthritis. It sucks, of course. So far, I have not been able to find a treatment that works. And it looks like the pain management options are pretty much exhausted .... except for attitude. And that is something that I can exert a great deal of control over.
But all in all, I am glad to be alive and look forward to each day. Not all of them are going to be sunny, but I find that the cloudy days help me appreciate the sunny days even more.
Having said all that, I really can relate to living through cloudy days that go on and on..... I have suffered from clinical depression. In fact, I know that it is still there, and without constant vigilance it could come back and take over my life. I have found that the only successful strategy is mindfulness. And mindful optimism. I have to be mindfully conscious of the beauty all around me and take the time and effort to appreciate even small things. It isn't always easy, but for me it is a lifeline that I can't afford to neglect.
When my husband was doing nightly home dialysis treatments and we were still working 10 hours a day, a small thing that kept me centered was this seemingly insignificant practice: After his treatment, when I was dead tired, but knocking down the machine while he held his sites, I would take the bag of dialysis trash out to the trashcan. I kept the outside container near the back door under the eaves of the house. And every night, when I threw away that trash, I would look up into the sky, rain, snow, or sparkling moonlight. And I would breathe in the night air. That's it. A breath of beauty and calm. And I would SMILE. I've found that even when it feels hard to do, just smiling makes a huge difference. The brain reacts, then the body, and finally the soul.
This minute, while I'm sitting here at my computer, I could focus on the pain in my back and knees. It is there and it isn't going to go away. But it is better, for me, to focus instead on way my breath feels when I suck it deep into my chest, or the softness of my t-shirt (or that it is a Saturday and I can even wear a nice soft t-shirt instead of being dressed for the public eye). I can listen to the rumbling of the clothes washer, knowing that when it is finished I'll be able to catch a whiff of that fresh, clean, damp smell smell of the clothes as I move them into the drier. I can see the hummingbird feeder from where I'm sitting. The flash of movement in the corner of my eye tells me that a hummer is sipping nectar there.
I know that tomorrow I will be seeing friends. Ah, friends.
And that brings me to the future... I marvel at all the potential friends that I still have yet to meet. I'm tingling at the anticipation of seeing a former student on Monday, all grown up and successful in Hollywood. I learned through FaceBook that he is back in town and now he is delaying his return to California in order to stop by school Monday morning to see me. I remember telling him that life is all about the people we decide to bring into our lives. I am glad to be able to count many of my former students among my friends.
Friends. We don't get to choose our families, but we do get to choose our friends. We don't get to choose many of the things that happen to us, but we do get to choose how we are going to react to them.
I'm going to place my bet on today and tomorrow and tomorrow and tomorrow. I'm going to live until I die instead dying while I live.
Aleta
-
DDright on :yahoo; MOOSEMOM Your life will change as will you husband's but it need not be all blues. It can still be a quality life and I hope you will be able to find peace and joy. :grouphug;
-
Perhaps it's my nature or perhaps it's what life has taught me but I just don't put much store in anticipating the future too much, one way or the other, whether it's to see it as hopelessly bleak or impossibly wonderful. Don't get me wrong here, I've always expected to be around and so I've had some goals and thought about plans and I've invested money too, I even plant bulbs in fall BUT I feel much more rooted and comfortable in the present and the near future. Even when my present isn't too great or pleasant I try to focus on how to make it feel a little less awful in the moment. And so far, life just keeps taking me up, sometimes way up and then I've found myself more than once exploring some darkish caverns too. I tried fretting and worrying way back when, but it didn't do anything as far as could tell. I fretted most when I was a little girl who had to grow up way too fast and all that did for me was etch a couple of deep lines between my brows.
I don't find it easy not to worry or to catastrophize about the future, I just find it to be a thief of my present, so I work at not doing it. I have a friend who was recently diagnosed with very aggressive non-operative prostate cancer and he is understandably upset and anxious to the point of paralysis. He still feels OK physically except that the hormone treatment is, well making him hormonal. So the family (wife and 2 kids, 17 and 13) usually goes away in the summer since the wife is a teacher and he's a musician who works from home. He's been using me quite a bit as a sounding board around his medical stuff as well as the rest of it and in early June he still had made no plans, reserved no flights, nothing, just focusing on his navel and the increasing probability that he won't be around for as long as most people. I finally just blurted out "what if you do die, let's say in May of 2012 to put a date on it and make it real, would it feel better to have spent the summer here with everyone sad and scared or to have had a last summer together, knowing what you know but trying to suck up some good times in spite of (and maybe because of) that knowledge?" They're currently in Corsica, having just rented a car and apparently the summer has been very very good. He and his son visited various friends in England, where he's from and where they've been many times. Not perfect, but it never was even without this, but still excellent. The end of August will be very rough medically but that future is not here yet. It'll come soon enough.
MM, I know that you don't think this way at all and that's exactly why I keep talking to you about this stuff. Your illness will take from you whatever it will take from you, that's a fact BUT you do not have to allow fear and uncertainty to ensure that it takes even more away. I'm not sure that your husband is forgetting anything (I don't know him but look forward to meeting him in Vegas) but I do think that you at times possibly forget that you aren't your Mum and that maybe, just maybe, your illness won't look exactly like hers did. It won't go away, but it need not make you impervious to any happiness or carefree moments.
I've never felt I could view my future, I can imagine it or project myself into it or whatever but it's always mere chimera in the end and I prefer to just hang out and make of it the best I can. :cuddle;
-
I asked my hubby about his feelings regarding the future, since he is the one on dialysis. He feels "lucky" in a strange way, as he can remember when people with kidney failure died, as dialysis wasn't available. He has always been a glass half full type of person, which has helped him thru lots of hard times in his life. I am also an optomist, and can see that if that wasn't part of your natural personality - how could you cope ?
I hope people struggling with worries can get support. :kiss;
-
"Don't worry about the future; or worry, but know that worrying is as
Effective as trying to solve an algebra equation by chewing
Bubblegum. The real troubles in your life are apt to be things that
Never crossed your worried mind; the kind that blindside you at 4pm
On some idle Tuesday."
http://www.youtube.com/watch?v=sTJ7AzBIJoI (http://www.youtube.com/watch?v=sTJ7AzBIJoI)
-
Thanks everyone for your replies, but I think I didn't make my question particularly clear. I should have better defined "the future". If you notice, I posted this in the "pre-dialysis" forum. When I think of "future", I DO think of my more immediate future, which will include commencing dialysis.
I do not know if I will be one for whom dialysis will be a godsend or a torture. I hear both sorts of stories and am smart enough to know that one person's experience will not necessarily reflect my own. It's just that I don't know what my own experience will turn out to be. There are things I can take control of, and I intend to take control of those things, but there are so many other things over which I will have no control at all. I know that my experience will not be like my mom's, but will it be like Bill Peckham's? Like any treatment, be it dialysis or bp meds or chemo, you don't know how your body will react, and this is why my immediate future feels frightening. So I wanted to ask other pre-dialysis people how they felt knowing that dialysis is looming closer and closer.
I wear myself out trying to find little pleasures in life and trying to not feel overwhelmed. But there are constant reminders everywhere. It's like when you learn a new word, and suddenly you find it everywhere. I'll be having a good day, and my box from Gift of Hope will show up and remind me. Or I will get a call from the mail order pharmacy about some bureaucratic screw up. Or we will go out to dinner to relax, like last night, and my dinner shows up with a baked potato instead of the renal friendly rice I ordered, so they bring me rice and of course it is brown rice. Meanwhile my husband is at the buffet enjoying whatever he damn well pleases. Like I said, there are reminders everywhere, and as my kidney function gets lower and lower, those reminders are coming faster and faster.
Monrein, I know you have talked to me about this before, and I so appreciate the time and effort you have put into your posts, but you are right...it's like talking to a brick wall conversing with me, so I promise to stop now.
-
:cuddle; :cuddle; MooseMom.
I've been trying to take a mentality of taking one day at a time. Until just yesterday, that's how I have felt.
I know, once ....and IF I have a transplant ::) I will need another one someday. This new kidney once if I ever get it, will not last forever. I'm hoping one of my kids can help me down the road one day. They are too young now and WANT to help, but they are too young.
I almost died from my renal failure, so I know what dying ls like. I know I can do dialysis again, I've accepted that knowning what it is all about. I know, I'll get through it again. I have to, for my kids. :) I want to see them grow up.
My kids give me the strength and hope to go on. :)
-
(((((((((MOOSEMOM)))))))))))) I wish i could help. And i know im not the one on, or pre D, but i do know how i feel about future etc.. as I have my Bo who i am horrably terrably afraid to loose, and i know where it 'puts' me at times. I, like Aleta (not saying she has my same issues ) have to keep ahead of myself or i can fall deeply into (brief) depression. I have a great attitude, and great faith, and lots of stubbornness to keep control, but it's a battle that is quite wearing. Im an anilyzer and i dig so deeply into things (lol, like you dont know that) that i can really dig myself into a hole with all the knowledge of the what if's. I LOVE the attidudes shared here and im going to save them as theres many times i could really use them. And for you MM, I wish for you, and i, and anyone else who needs it ;) that we could find a peace and hold onto it through all this.
-
My pre-dialysis present was way worse than my dialysis present so I dunno...it all happened pretty fast, both times really.
AND you will not shut up MM...not on my account anyway....please. Only if you truly worry less then you can stop going over it as much. I do remember those renal meals in restaurants...I was a pain. Meh, I paid, they made money. :cuddle;
-
Moosemama always loving you, always believing in YOU!!
xo,
Rachel
-
"Don't worry about the future; or worry, but know that worrying is as
Effective as trying to solve an algebra equation by chewing
Bubblegum. The real troubles in your life are apt to be things that
Never crossed your worried mind; the kind that blindside you at 4pm
On some idle Tuesday."
http://www.youtube.com/watch?v=sTJ7AzBIJoI (http://www.youtube.com/watch?v=sTJ7AzBIJoI)
Thanks for this link, Bill. I had not seen this video before. It is well worth the few minutes it took to watch.
:waving;
-
Thanks everyone for your replies, but I think I didn't make my question particularly clear. I should have better defined "the future". If you notice, I posted this in the "pre-dialysis" forum. When I think of "future", I DO think of my more immediate future, which will include commencing dialysis.
I do not know if I will be one for whom dialysis will be a godsend or a torture. I hear both sorts of stories and am smart enough to know that one person's experience will not necessarily reflect my own. It's just that I don't know what my own experience will turn out to be. There are things I can take control of, and I intend to take control of those things, but there are so many other things over which I will have no control at all. I know that my experience will not be like my mom's, but will it be like Bill Peckham's? Like any treatment, be it dialysis or bp meds or chemo, you don't know how your body will react, and this is why my immediate future feels frightening. So I wanted to ask other pre-dialysis people how they felt knowing that dialysis is looming closer and closer.
I wear myself out trying to find little pleasures in life and trying to not feel overwhelmed. But there are constant reminders everywhere. It's like when you learn a new word, and suddenly you find it everywhere. I'll be having a good day, and my box from Gift of Hope will show up and remind me. Or I will get a call from the mail order pharmacy about some bureaucratic screw up. Or we will go out to dinner to relax, like last night, and my dinner shows up with a baked potato instead of the renal friendly rice I ordered, so they bring me rice and of course it is brown rice. Meanwhile my husband is at the buffet enjoying whatever he damn well pleases. Like I said, there are reminders everywhere, and as my kidney function gets lower and lower, those reminders are coming faster and faster.
Monrein, I know you have talked to me about this before, and I so appreciate the time and effort you have put into your posts, but you are right...it's like talking to a brick wall conversing with me, so I promise to stop now.
i've been thru that pre dialysis, twice.
I'll be honest, my first emotion was "why me ?" However, you're the only one that can get yourself out of that feeling. I'm sure your husband cares for your deeply, and I'm sure he'll do whatever he can to support you, but ultimately it is up to you to get out of that feeling. I try to find the positives (now that i'm on dialysis).
My wife was very supportive with the fact that i had to go on dialysis twice. I find my strength in her support. She knows that if i didn't start dialysis, she would wind up burying me pretty fast, and that is something I don't want. I want to stick around and keep her company for a (long time) while.
When i was on pd, the upside was travelling. We could still continue to travel. Now that i'm on hemo, i'm eating like there is no tomorrow (i do my hemo everyday), but believe me, when i was on pd, it was tough to start on the pd diet at first. I enjoyed drinking orange juice, milk, diet cola, but i had to cut all that out when i was on pd. now that i'm on daily hemo, i can enjoy eating all that stuff again. I believe that once you're on dialysis, you'll get into a 'routine', and once that is established, it won't seem as bad.
-
Now that i'm on hemo, i'm eating like there is no tomorrow (i do my hemo everyday), but believe me, when i was on pd, it was tough to start on the pd diet at first. I enjoyed drinking orange juice, milk, diet cola, but i had to cut all that out when i was on pd. now that i'm on daily hemo, i can enjoy eating all that stuff again. I believe that once you're on dialysis, you'll get into a 'routine', and once that is established, it won't seem as bad.
Oh, I've been doing the pre-renal diet for 7 years now, and I plan to do either daily or nocturnal hemo so that maybe one aspect of my life can return to something near normal. And yes, I keep telling myself that once I get into that routine, maybe it won't be so awful. Thanks for that reminder.
-
MM, I was just rereading my post about starting D. One of the last of my posts in the thread was 3 months from my start. It really was pretty routine by then, even the diet and fluid restrictions. Never forget that the human mind has an amazing capacity to adapt to the strangest circumstances and make them into a new "normal."