I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Wayne on September 23, 2008, 04:33:09 PM
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I have to admit I am sometimes guilty for what I have to put my family and friends through. Obviously we with ESRD go through hell and back but I have to also think of my family. In my intro, I had mentioned how I have a wonderful wife...and I still do! :2thumbsup; She is so supportive and she is truly the light of my life. I have been thinking a lot lately about how different I have been the last couple of years towards her. I don't treat her differently, it just really feels that we don't do a lot of fun things together anymore. I am so tired I just don't want to do anything but stay at home. She understands that when I say I am tired, that I mean it, and she doesn't push me to do things when I say I can't. I guess what I am trying to say is that I feel guilty that I can't do adventurous things like I could several years ago. We are still relatively young, early 30s, and I would never have thought that at this point in my life that walking a 100 yards would make me tired. I know it is just something that we have to adapt to, but it just doesn't seem fair....but such is life. It also frustrates me when I have college friends come visit me from out of town, and I just don't feel like doing anything. Luckily they understand, but I think it bothers them as well because we all went through college together when I was healthy and could hang with the best of them. I guess my hope is that when I start dialysis, or get a transplant (d is right around the corner so I am sure it will be first), that I will at least have a little more energy so I can have some kind of adventure in my life again.
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Uh, when did I change my name to Wayne?
I'm right there with you, even though we're in our early 40's. Although...40 is the new 30. ??? You sound JUST like me. I feel guilty all the time because I'm too tired to do this, that and the other (especially "the other"). We're lucky to have understanding and supportive spouses. Now...I need to go read your intro and see what else we have in common. :)
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Great Texans think alike!! 8) So true about "the other." I left that out...
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So its a Texas thing? Now I know why ... maybe if I moved I'd have more energy?
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It probably doesn't help that it is always so hot around here either! I can go 100 yards in the ac...only 50 out in the Texas heat! ;D
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My husband told me recently, that I never want to go do things. I HATE walking around the mall! I just want to sit and watch the people go by. Most things he suggests involve walking or is time consuming. I don't even like going out for dinner that much anymore. But, when our kids are around, I put on my happy face and try really hard to be the old me. It takes a lot of effert and I am tired when they go home. So, I feel guilty that at this point in our lives, I am holding him back and life isn't what he thought it would be. Guilt--it is alive and well in the other 49 states, too! :rofl;
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If I'm being totally honest I'd have to say that my energy definitely comes and goes. Sometimes I'll be all excited about going to the mall or something and I'll get ready and then almost as soon as I get to the mall I'm ready to leave. This last Friday I had a friend of mine in town from Arizona. She and her family wanted me to join them down on the Riverwalk. I agreed. I managed to get throught the day, but I was pooped when I got home. Slept really good that night.
These last few days I've had pretty good energy during the day, but I am sleeping between 10-12 hrs a night!
These next few nights are going to be a real trial. My husband has gone out of town til Friday and I have to watch the security cameras ALL NIGHT - 10p-6a. I may be on-line trying to stay awake. Hopefully someone will be on-line, too! This is going to totally screw me up!!!
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you are lucky to have an understanding partner
I feel guilty enough without anyone's help
my son is in an Aggie game Saturday at 11:30
not only is it hot, those Aggies stand up during the whole freakin game
and they rent those seat cover things and they still stand up
I can not stand for the game so all the wind is not one me
it seems to be windy in College Station
my husband is upset because I am going to my son's apartment and watch it on tv
then we all go out to eat and I get to see Bubba
right now it is just too hot
today I felt great until after I did two little errands
then I was busted
my husband does not understand
tonight I am very tired
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You must be living my life! (interchange spouse here _____)
I feel the exact same guilt over my husband. I never have the energy anymore to do any of the sports we used to do together. My idea of a good outing with him is to go for a drive, but he has a sports car and drives like a maniac so I usually get nauseous. Thankfully he has friends that are very involved in the sports he likes so he still gets to do them. This week-end I told him I felt sorry for him because he had a wife who never wanted to do anything and he told me he was sorry for me because I never wanted to do anything. We've been married 20 years, but somehow I don't think he ever bargained for this. I'm glad to know I'm not the only one to feel this way.
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I've given up on guilt. I know my limitations and live with them. (I don't have to enjoy them though.) When I visit family, we do planning differently. My sister and I can go to grab lunch or dinner, but she knows that I just don't have the stamina to walk for hours shopping. When we go shopping, I make sure to have a place I can sit down when needed... a bench, the furniture department, the car we came to the store in. My friends have been supportive. When I volunteer, I do the sit at the table jobs.
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I honestly have to say that my wife is understanding enough that I don't feel guilty. But I have noticed a huge improvement in energy since I have started dialysis again. The more I get up off my ass the better, in general, I feel. Of course I have days that I do feel worse then others, but I don't feel guilty about it.
I think those of you who have not started dialysis, once you do start and get a month or so into it you will see an improvement and so will your spouse.
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Minutes before I was to be wheeled into the operation room my sister and I were lying side by side on separate gurneys waiting to go into the operating room.
I glance over and my sister is silently crying her eyes out, fearful about what was about to transpire.
The Guilt of that day will be eating away at my soul until the day I die.
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Wayne I hope dialysis improves things but why when you feel so bad have your centre not put in an emergency cath to start dialysis immediately. Why are you having to waiit for dialysis?
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I think I should apoligize, I hope my post wasn't taken in the wrong contex, and for those of you who haven't read my intro, months ago. My wife had a liver transplant and is now on the list for another transplant. Most people don't know anything is even wrong with us, and that is how we like it.
But Wayne...once you start dialysis you will feel much better.
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Been there, felt the guilt. Live with it everyday.
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I think I should apoligize, I hope my post wasn't taken in the wrong contex, and for those of you who haven't read my intro, months ago. My wife had a liver transplant and is now on the list for another transplant. Most people don't know anything is even wrong with us, and that is how we like it.
But Wayne...once you start dialysis you will feel much better.
I can't speak for everyone else, but I wasn't offended. I have to agree with you, that except for my fistula I pretty much look the same I always did so people who don't know me have no clue that I am ill. I also believe I act the same as far as personality. And I hope you are right about feeling better after d...I have my neph visit next week and I believe we are going to try and finalize which way we are going to go. I really want to try pd first and I think my neph finally agrees that we should give it a shot first.
Wayne I hope dialysis improves things but why when you feel so bad have your centre not put in an emergency cath to start dialysis immediately. Why are you having to waiit for dialysis?
I don't know if I have a good answer for that. I overall don't really feel bad, I just have no energy. I still produce a lot of urine, of course release a lot of protein with it. I think since I don't "feel bad" my doctor has wanted to hold it off as long as possible. But we are certainly getting close now...I have started pushing it a little more than I used to. It's my decision anyway, but I think my neph is honestly trying to look out for me.
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Jenna's urine output never really changed until after she started dialysis. Even then she was putting out a pretty normal amount, but the doctor said "it's quality, not quantity."
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Jenna's urine output never really changed until after she started dialysis. Even then she was putting out a pretty normal amount, but the doctor said "it's quality, not quantity."
I don't think this is the case, but it seems like I go more frequently as my GFR decreases. I know I definetly go more during the night. I have enough trouble sleeping without having to go to the bathroom every hour!
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I don't think this is the case, but it seems like I go more frequently as my GFR decreases. I know I definetly go more during the night. I have enough trouble sleeping without having to go to the bathroom every hour!
Wayne, me too I'm sure my output is increasing the lower my GFR goes. I have to go at least twice during the night but as Karol says it's quality not quantity.
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What does it mean when you are outputting protein in your urine
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I know how you feel to some degree.
I don't have a spouse but my son bears the brunt of my lethargy in that I can't play soccer with him anymore, can't go for walks in the evening (he's a jogger), can't stay up late to drive him home from gatherings with his friends. He's taking on an increasing role in caring for me rather than me caring for him as I always have.
Fortunately I don't feel a lot of guilt. More remorse than guilt because I have generally accepted this is how things are. I just do what I can and I'm sure he appreciates that.
-Devon
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I'm going to speak from the other side, as a spouse. I know Rob feels a huge amount of guilt because he is on dialysis. He feels horrible that I am his caregiver, especially because he feels he should be the one taking care of his family. Not vise-versa. He hates the fact that he can't walk around a mall for very long or that he can't walk around the block without feeling winded and worn out. He feels horrible that he can't go out and throw the football around with our son or play a quick game of catch with the baseball.
I tell him not to feel guilty, but I can't stop him from feeling this way. It makes me sad to watch him go through this. I know what he was like before he got sick, he could always go go go. As spouses, many of us understand that our loved ones can't do much. I know that now and then I get mad that he has this disease. I get upset that he can't do anything. Even though I understand, it's still upsetting. Then I see him try so hard to be "normal" that it makes ME feel guilty for feeling this way. So, guilt is a 2 way street here.
Right now, on top of diabetes and kidney disease, Rob is dealing with torn ligaments and shattered pieces of bone in his left knee. He will be having orthascopic surgery to fix it next week. He hurt his knee in work a couple of weeks ago, so he has been home with me. He decided not to lie around and rented a carpet cleaner to do our rugs this week. This amazing man, with all his knee pain and weariness from kidney disease, cleaned our carpets for 2 days in a row. I was upset with him for doing this, but I admire the hell out of him also. He is stupid for doing it, but amazing for doing it.
Wayne - I hope you feel better once you start dialysis and know that your wife loves you no matter what. :flower;
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I hope things improve when you start dialysis. Hopefully, you will have the energy to start doing all the things you enjoy.
My perspective is basically like a third party since my mom is on dialysis and my father is her caregiver, although the situation affects the whole family. She does feel terrible that she has this disease, and since she started dialysis seven years ago, she has gotten worse physically. She rarely feels like leaving the house and feels so bad that she and my dad stay in their house all the time, except for doctor appointments and out to dinner a few times a month. She feels like she has taken away the fun and joy from their lives, because she is now in a wheelchair and my dad basically lives to take care of her. But he happily does it and he hates to see her this way and in pain every day (from neuropathy), so he feels terrible that she has to go thru everything she does. They were very active and used to go to their home in Florida for the winter, play golf, go out to dinner often, etc. Now they can't do those things. That makes it worse for her, because they raised their family and retired being able to do whatever they wanted and able to enjoy their 'golden years" with no worries. Then two years after retirement, and they are "imprisoned" in their home and cannot do the things they loved to do. However, there are many people that have it worse off then they do, and they are aware of that too. Some people are in worse shape physically, some are so young when they get this disease and have to live their whole lives with it, and I could go on and on.
As my dad says, she has it far worse than him, so how can he ever complain about having to take care of her or give up the things that they enjoyed...at least he is healthy and able to take care of her and be with her. So they try to enjoy each other's company, and they cherish every moment spent with their grandson and children.
That's my point I guess.....yes, the person with the disease usually feels terrible for their loved ones having to give up so much and the burden and responsibility of caring for them, especially the primary caregivers, but they need to remember the loved ones are happy to do it. And although there are many limitations and changes, life can still be rewarding!!
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Yeep, here too but if people understand and have compassion cool if not :thumbdown;
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I wholeheartedly agree with drinkboy: the loved ones are happy to be caregivers. Actually, "happy" may not cut it here. There really is no word to describe how caregivers feel...except maybe "love". We love deeply, even through the most difficult times of fear, anger, loss of hope, and all the other negative feelings.
Don't feel guilty.
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I wholeheartedly agree with drinkboy: the loved ones are happy to be caregivers. Actually, "happy" may not cut it here. There really is no word to describe how caregivers feel...except maybe "love". We love deeply, even through the most difficult times of fear, anger, loss of hope, and all the other negative feelings.
Don't feel guilty.
Right on annabanana :yahoo;
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What does it mean when you are outputting protein in your urine
Long story short....it is one of the main issues with fsgs. When I was initially diagnosed, I was releasing around 8 grams of protein in my urine over a 24 hour period, the normal functioning kidneys release about 850 mg. One of the last 24 hour samples I did it was 38 grams...we don't do many 24 hour samples anymore b/c we know it is so high. Basically what happens is the filters start releasing protein b/c they are damaged. Obviously after a while they start releasing other things as well and the kidneys go to crap.
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I can't speak for everyone else, but I wasn't offended. I have to agree with you, that except for my fistula I pretty much look the same I always did so people who don't know me have no clue that I am ill. I also believe I act the same as far as personality. And I hope you are right about feeling better after d...I have my neph visit next week and I believe we are going to try and finalize which way we are going to go. I really want to try pd first and I think my neph finally agrees that we should give it a shot first.
I don't know if I have a good answer for that. I overall don't really feel bad, I just have no energy. I still produce a lot of urine, of course release a lot of protein with it. I think since I don't "feel bad" my doctor has wanted to hold it off as long as possible. But we are certainly getting close now...I have started pushing it a little more than I used to. It's my decision anyway, but I think my neph is honestly trying to look out for me.
Okay, this convinces me that you are the male version of me. It sounds like you and I are almost in the exact same place in our disease and process. I have complete faith in my Neph and trust he'll start me if and when needed at the right time. Fatigue and muscle weakness are my only enemies at this point. I don't know if you saw my post from yesterday, but the "committee" has accepted my sis-in-law for donation! She was my 4th donor tested (she's my husband's sister). We hope to do this in November before the holidays! I'm stoked!
Edited: Fixed quote tag - okarol/admin
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That is awesome!! :clap; I have a great friend that is the same type as me and wants to be tested, but he was a drug user several years ago, so I think they would reject him right off the bat.
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My advice (take it for what's it's worth :twocents; LOL) is give him (your friend) your coordinators number and let him call. If they don't feel he's a good candidate then they will reject him. Just tell him to be 100% honest in his interview or psych eval. But if he truly wants to "help", let him. Who knows, right? Because God forbid something happens to you he will know if his heart that he at least tried. Some people just really want to help! He sounds like a great friend! Only two of my friends even offered. One is a major smoker and there is absolutely no way she can or will quit. My other friend stepped up just before my sis-in-law started her testing so they told her to wait (they'll only test one at a time). I saw her this last weekend and now she is pregnant, so she wouldn't be able to test for a while anyway. But the offer, and the fact that she called my coordinator, made her and I feel really special! :cuddle;
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So true....what would it hurt? It's not like the cost of his evals are coming out of my pocket.
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Exactly! :clap;
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Hi guys.....read the book, seen the movie....I know exactly what you are talking about. Mind you, my husband pushed me really hard when I was really tired so I never felt guilty, just murderous. Maybe I felt a tad guilty about feeling murderous....let me think about that. Nah!!!
Then Aranesp came along and I have been a ball of energy ever since. At worst I am a little tired at the end of the day but I still front up to the gym most days, I have started up a new business, I'm renovating my house and I am running around after a new puppy yet my neph told me it is time to hit the dial. So, I am going on holiday to Italy for three weeks in a couple of weeks and then I will start training when I get back.
I have total sympathy for those who are going through that dreaded tiredness that even when you walk up three steps, you are gasping for breath and your whole brain just feels like it is in a fog. I remember on day I was so exhausted I was "walking" down the stairs on my backside sobbing because I couldn't work out how I was going to get back up the stairs again. It is a disgusting feeling.
Anyhow Wayne, I am sure you are going to feel much better once you start on dialysis. I will be interested to hear what your Neph has to say next week. And just as an aside, I really must stop been so intermittent here. Can't believe that I missed a newbie as cute as Drinkboy!!! I think Drinkboy should meet KatieJayne. Hang on, maybe I should check his intro and see if he is married first. I'll do that and come right back if I have made an indecent suggestion.
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I will let you play match maker...I am going to stay out of it! ;)
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Wayne,
I think many of us feel your situation in our own ways and from our own perspectives.
Several things - YES the hourly wake up call at night to pee, and then not have that much come out.. that was the bane of my life for about the last 6-9 months before dialysis. About the only really GOOD thing dialysis has given me is a real nights sleep.. I may not pee much anymore.. but at least I'm not woken on the hour at night with the urge to go stand over the bowl!!! :) I so understand that (I am a FSGS man too).
On the guilt thing.. yes... absolutely it is very difficult when you feel you should be doing more and like you let your partner down. Iknow when I had a gf I often felt that. She said she understood but *I* knew inside that I could do better if I wasn't sick (and don't get me started on the whole "indoor sports" situation!!) but you know what.. you can't do much about it so you have to live with where you're at - and if you try and push yourself too hard (hello Lucinda, yes I'm talking to YOU!!!) then it could just make things worse for you (and by extension your partner/family).
I think the thing is that for some aspects of our lives, ESRD and Dialysis tend to put a lot of that on pause... or at least reduce what we can acomplish with our available energy. Yes, some days are better than others... some days you can just feel like total rubbish, and others like you could run a few miles. That doesn't help things either.
All I can suggest is to know that hopefully this will be a temporary situation. Hopefully starting dialysis will get you to a stable norm where you have enough energy and better feeling to do more, and thus feel like you're not letting down your wife more.. and when the day comes that you get a transplant, that hopefully it will really bring you a far more normal quality of life back and you can go do all those things you're hanging out to do (I know- I have a long list!!).
I'm sure you talk about how you feel with your wife, and she understands and just wants to support you (like Anna, etc) but that won't stop how you feel... I guess just plan for those days when you can do things better, and have the goal of a transplant really allowing you to live the way you SHOULD be living... rather than suffering.
(and yes I know, a transplant is NOT a cure, but another form of transplant.. but it's the best thing we have now in terms of quality of life).
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Isn't it funny that probably most of us would be offended if our partners or family were in this role reversal. I feel a tremendous amount of guilt yet I would consider it my responsibility to love and care for my loved ones if they were in my position. I want to start liking myself again. I finally got to a place in my life where I was in a great place. Remarried with a new baby, I had life in a better perspective and really liked myself. I stopped trying to be a supermom (something single moms do alot), and even started treating myself every once in a while without feeling selfish.
Fast forward 3 years and here I am feeling like a pathetic invalid. I can't stand my appearance, my limitations, and half the time my tears that only pour out when no one is home to see. I want to dance with my teenage girls again. I want to do cartwheels in the front yard. I want to watch my son and his academic team win there matches. I want to be able to run to the ocean and full up the sand bucket full of water with the baby. It was so easy to do that less than a year ago. I know that so many others are worse off, and I appreciate all that I do have, but the truth is just this--I have lost my identity of who and what I am. I don't want to take on this new identity. I wish I could disappear like the old days when the pregnant teenage girl got sent off to the "place" and came back 9 months later like her old self.
I am ususally the most positive person anyone could meet. I read what I write and even wonder if it is me talking. Maybe I am such a mess because I am trying to come off of prednisone and went from 60-40 10 days ago. Either way, this is not easy no matter what excuse I put out there.
Remember when feeling guilty that this disease is not something that we asked for or something that we had control over. We would all love to be healthy and happy without feeling as though we are burdening anyone else. I know our loved ones are smart enough to know that as well. My sister told me to keep my chin up the other day and instead of crying, we laughed hysterically knowing that as fat as my neck is now--I have no choice--it is permanently up :yahoo; :yahoo;
Great day to all
Andi
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:rofl; :rofl; :rofl; :rofl; :rofl; :rofl;