I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: zona on October 09, 2009, 05:59:00 AM
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I have a hard time sleeping,I wake just about every night around 3am. I worry that kidney failure will cause me to die an early death. I worry what my family would do without me. What if dialysis doesnt work for me? Is that possible that dialysis would not work? I lost my Dad to this disease when I was 7 years old. It was 1967 and dialysis was not available to him until it was too late. I remember what he went through as young as I was. I have not felt good for a very long time now,I want to be the wife and mother I once was. I have always been a strong person but sometimes this is too much. I was talking to a close family the other day about my worries and she said "self pity is not an attractive trait". Well, that shut me up quick! Is it self pity to be scared and to just want to talk to somebody? I am so thankful to have the chance to let my feelings out on here! Now I will go have a good cry.
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Zona,
Worry about the unknown is natural, so don't beat yourself up about it.
But, that time you spend worrying robs you of time to live life fully. My father-in-law had the same kidney disease as my husband and sister-in-law. She looked at the processes HE had to go through and said that she would not ever go on dialysis. She was willing to die instead.
BUT, dialysis has changed. She (my husband, too) are both on dialysis and doing well. Both live full and productive lives. My SIL has a home in China and travels there a couple of times a year. My husband works MORE than full time.
The point I am trying to make is that you have no way of knowing exactly how dialysis will change your life (it will change it, though). There will be adjustments, but you will most probably feel much better than you do now.
And there is no reason to assume that you will not have a full and happy life while on dialysis. Don't use your father's history as a mirror to what you will experience.
I wish the very best for you.
:grouphug;
Aleta
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What you are doing is only natural , we all have been there. We could worry ourselves to death ! We worry about family, friends , the world , but none of the worrying makes it better or worse. Dialysis has changed alot over the years and im sure produces better results in a safer way. Everyone is scared before they start , its only natural , but its not quite the monster we all think it is. ! (it can bite you on the :sir ken; now and then )
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Zona, I could have written the same post. I feel just like you in so many ways. Late night is when the fears and "what if's" creep in. Self pity? Is this friend facing a life changing disease? I am sorry she said that to you. I think we have every right to get down, worry. wonder about what is ahead. I think you will love being here -- everyone here understands exactly what you are going through. Come here and rant, cry or just scream if you need to. We are here for you :grouphug;
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Thank you so much for your encouragement,it really does help to vent! Nighttime is the worst for a worry wart like me.I have even started to have panic attacks.Never had those before and boy are they scary! I will get through this and be a stronger person for it. I will go out kicking and screaming!! :rofl;
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Panic attacks , now why doesnt that suprise me ! I had an episode of panic attacks , i dont know what triggered them as im the most grounded (problem sorter)person i know ! Yet i could be sat watching tv , thinking of nothing and bang they would start. I found i got a bit of warning when one was due so i made a point of doing something , making a drink , anything to distract myself and most times it stopped it going full blown. You have my sympathy they are horrible !
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Thats what I do! I try to distract myself with something. I actually ended up in the hospital this past July. I thought I was having a freakin heart attack! I think the stress and worry cause it.
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don't expect family or friends to understand. the few that do are extremely rare. it's isn't self pity and coming here to vent is one of the best things you can do. dialysis has changed greatly. we have members on the board who have been on dialysis for 20 years. you don't need to worry that it won't work for you. remember information is power. this is the best place to find power. most dialysis patients have trouble sleeping. the more dialysis you get the better off you'll be. you may want to look into nocturnal or home hemo. again information is power.
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There are a lot of days that I feel the same way you do, and I also feel so horrible for putting my husband and daughter through all this, but then I realize that I am wasting valuable time moping around. I am also really glad I found this site so that I know I can vent somewhere where people will understand. My friends and family try but how can someone that has never dealt with any of this themselves understand at all?
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What I try and remember is that when it is your time it is your time. I've had kidney failure for 22 years and I have mulled over death and planned my funeral and even the 3 songs I want played and guess what?.... I'm still here.
Dialysis will change your life. No doubt about it. But, you will adjust. You will have your good days and your dialysis days (poor days). But, you will be around to make dinner and go to games.
:waving;
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Thank you everyone for your kind words. For the first time in months I dont feel so alone. I have needed a place to just "fall apart" if I felt like it. And I appreciate to be able to do that here.I know I will have to start dialysis soon,because I am having a lot of uremia. Today I am swollen and short of breath. My neph. took me off lasix because she said it would no good for me anymore and was making my kidney function lower. I am also having a lot of stomach problems,is that another symptom of needing dialysis? I mean I have slow digestion and have to take a laxative to go to the bathroom! My whole body seems to be falling apart. I am having family over tonight,so its time to put on my happy face. :)
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I had to look twice to see if I started this post. Heck yeah, this is normal and I'm sure everyone feels this same way from time to time. I remind myself everyday to take just one day at a time because nobody truly knows what tomorrow will bring them. I work in a hospital and I see people everyday that are perfectly healthy and then wham they are dead. You know that you have a life altering problem so you "think" you know your fate. I used to get up and cry in the shower because of that overwhelming feel of dread that there is no good way out of this problem. This is not self pity and I hate it when people say things like that, it is awareness of your health condition. Stay positive!
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Zona,
Are you considering PD? I was terrified to start dialysis and my Neph kept telling me that I would feel better. I used to think that I'd feel worse when on dialysis, but the reality is that I feel healthy again! Kidney failure to me is worse then going through PD.
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Stop worrying! I have the same problems. I have an mp3 player that I put audiobooks on. It doesn't matter what the books are; I start listening and forget about everything else. In minutes I am asleeo. Another thing I do is start counting backwards by ones from 8367 (or something like that). And one thing I do, or used to do, is think the ABCs backwards. That one worked for a long time until I learned the ABCs backwards. BUT for a long time Starting at Z, backwards, I would never get to M before I went to sleep. The lords prayer backwards works pretty good. Pledge of aliegence...backwards... Anything that will require you to only be able to concentrate on that and not allow you to think about what your mind wants to think about. i never got the idea about counting sheep. Just concentrate on an unsolvable problem.
jmz
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Kana, I really want to do PD and have already met with the PD training nurse. The problem is my mother-in-law who has advanced alzheimers disease lives with us and we are in the process of getting our house ready for sale to help pay for her nursing home care.Its getting harder and harder to care for her at home. So with all that on my plate right now I decided to have the fistula placed in my arm just in case. After the house is sold and we are settled I definitily would rather do PD. I am kind of a control freak and think that would be the way to go for me in the long run. I just want to be prepared for everything.
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hurlock1, I know what you mean, I say the Lords Prayer,and I have also found listening to nature sounds such as the ocean or any kind of repetitive sound works. Oh, and xanax works too. ;)
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I would just like to comment on the expression "self-pity". If we were totally healthy people and we were enlightened enough to fully grasp the reality of what kidney patients must go through, we would be most unfeeling if we did not have great concern and empathy for those people. To feel sad that we must endure this and to be empathic with ourselves is simply a way of being kind and gentle to ourselves. When people find it "unattractive" what they really mean I think is that it's too uncomfortable for them to bear emotionally, in the same way that it can be uncomfortable to be with someone who is brutally disfigured or extremely emotionally distraught. However, that is the nature of our human existence. Beauty, joy, all things positive are fleeting and to pretend that all is perfect, attractive and pleasant all the time is mere delusion, I think. None of us will get out of here alive and we will all face discomfort of one kind or another at some point. When we are able to truly bare our souls about our pain with someone who will not be too frightened by it we can then be free to move away from a preoccupation with it and get back to making the most of the positive aspects of our existence. If we are always shut out or made to feel that we must only be "positive" and all the time at that, we will find ourselves more and more living in our the darker recesses.
I believe this to be true for human beings in general, but it is of course an especially hairy roller coaster ride for those with any severe and chronic illness.
Zona, please keep bringing, and hopefully leaving, your worries here. We get it and we can sit with you through the roughs just as capably as we can rejoice with the ups.