I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on August 19, 2008, 05:54:17 PM
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I was thinking about how much I have learned through reading the threads on IHD. I feel like I have become much more aware and empathetic to the challenges and changes that kidney patients face. I am so grateful to have the information available. But not all caregivers have this opportunity. I guess my question is: If you could hand your family or friends a book or brochure or video that would enlighten them, what would you want them to know?
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About all the emotions and extreme tiredness sometimes.
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That I can't have cheese on my hamburgers!!! Jesus how many times do I have to say it!!!
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this is funny I was trying to think of a post about this very thing
I had a better day today---- cooked, cleaned, fed the animals, got some other odd jobs things done and when my husband comes home he will think I am cured------ all is back again======= I am already tired and so tried of being tired------ husband will say -"your color is good today, you must feel great----- I have always been a natural tan but I think dialysis patients turn kind of brown- baking a pie does not make my kidneys pee like they used too.......Lord knows or we would all be in the pie baking business........
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yea, when honey calls he says "you sound so good I forget you are sick".....how does sick sound??? could be on ignorant things being said too.
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I think sometimes people forget that just because I have CKF, I can go out and have fun sometimes. We are not dying!
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Since I was not the one with CKD but Dustin was I was so SICK of hearing "so when is your transplant???" I remember when my brother in law asked I said are you VOLUNTEERING??????????????????????????????????????? Or why does Dustin have to sleep all the time. Look up the word ANEMIC!!!! Why are you so pale???? Oh gee, I could go on forever!!
Lori/Indiana r.i.p. Dustin I love you!
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I wish they all understood the concept of limited energy. Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after. When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.
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I'd want them to know how ESRD is just as devastating emotionally as it is physically.
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All of the above.
I think my family has become used to me the way I am and forget how hard it is on me both physically and emotionally.
I would love to take a week off and do no cleaning, no cooking, no activity whatsoever except what I wanted. No demands
with no guilt.
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Not having any close family, it's hard to answer. There are days when I don't want to get up early but I have to. I know I have to fend for myself and I realize it makes me stronger but I still have days when I would just like to rest.
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We are all singing the same song! :guitar: I push and push when people are around and then collapse when I am alone. My husband works 3-11pm, so he only sees me in the morning most days. He doesn't even hear me up at night when I am vomiting or just not sleeping. There is no explaining the level of "tired". If one more healthy person tells me how tired they are or how bad they feel because they couldn't sleep last night, I am going to hit them! :Kit n Stik; Treat us normal but respect and remember we are dealing with a life altering disease.
Sunny is right, family becomes use to the way we are. And it is both physical and emotional.
Good post, Okarol
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I would like my family to understand the seriousness of the disease even though I have had a transplant. I am not cured and they think I am. I still feel tired and sometimes barely get through the day. I also wish people at work would understand more about dr's appointments and leaving early for dialysis when I was on it. And, I would want my hubby to understand why I had NO interest in sex while I was on dialysis.
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I would like my family to understand the seriousness of the disease even though I have had a transplant. I am not cured and they think I am.
This about sums it up for me even though I am not close with my family. I live with them, but I'm not close.
I push and push when people are around
I also push myself to much and people don't understand this how much or how hard I push myself so I have a sense of feeling like a normal person.
Also, wish they understood INSOMNIA. No I didn't fall asleep with the TV on, yes I pretend to be sleeping till you leave, I will eventually get some rest.
More than anything, I wish they understoood about visual impairment/blindness. Sometimes I can't see or recognize you or what you are pointing at (especially in bad light or to bright of a condition)
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I have to agree with the pushing and pushing. My two nephews came to stay with my wife and I about a month ago and they wanted to go to the zoo. So me being the loving uncle I am, ;D , I took them. We hadn't been there an hour and they were complaining they were tired. They are young so they don't really understand what is going on with me so I just used the age issue to make them feel guilty. I told them as long as my old behind was still going, they could keep going. Of course, I paid for it later when I wanted to sleep for 2 days straight. I wish my family would understand that when they are visiting and I am sleeping in, it's not because I am trying to be rude....I am tired and I need my rest! Thank God my wife understands. :2thumbsup;
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I would like for my family to understand the tiredness. The tired to the core of your being when you haven't done a thing. The complete exhaustion at times after 5 minutes of cleaning.
I really don't think a person whose kidneys work can ever understand that. When I say I'm tired, they tell me how tired they are also and I just shut up because comparing their tiredness to mine is so ridiculous. It's obvious they have no idea about kidney failure.
I am trying to educate them little by little but I think my family is mentally challenged when it comes to learning about my health. :banghead;
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I was going to a therapist to deal with some emotional issues, in particular a job from hell with God sent insurance but also my kidney failure. I had been seeing my therapist for at least five sessions. My kidney failure came up in every session mainly because she kept confussing renal failure with cirrhosis of the liver. I'm not even sure you can live without a liver and yet, with out fail, she would always ask "so you're waiting for a liver transplant?" It made me so depressed because here I am paying someone to be empathic toward me and my condition and she couldn't even remember what condition I had. So I wish my family could understand how lonely it is to feel surrounded by people like that.
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Cat, you need to call out your therapist on that not-so-minor confusion. You can tell her that you feel as if she's only listening with one ear instead of two and that there is a difference between liver and kidney failure, just as there is a difference between diabetes and asthma. Sometimes the devil is in the details as the saying goes and the details of what we cope with are important to a true understanding of what we must contend with.
Don't let the therapist be another source of frustration for you. She needs to pay more attention.
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I think i agree with all the above , there are so many things i wish people would try to understand. I even get from the PD clinic nurses when i go , 'oh you look well' Yes, its amazing what make -up can do ! While i would never place one illness above another , many people are more sympathetic towards cancer patients , they dont understand more about it , but if you have cancer you must be really ill , if you have kidney failure ,well dialysis will cure you once you have done it and doesnt it mean you just cant pee ? No one seems to understand all the other complications that go with kidney failure and if i happen to mention one of them its like ..so how come you got that ? You want to try to educate people but sometimes i really feel like giving up!!!!
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I wish they would understand that I need days off on a regular basis. It would be wonderful if I didn't have to ask them for it, but they just gave them to me. Wouldn't it be great if 1/week I arrived home from my job to dinner being ready in a clean house where I could just relax for a little while and enjoy my family or take a nap (before doing dialysis). For 1 day, I wouldn't have to plan, purchase, and prepare dinner - that someone else did all the thinking AND the work. A day that I don't have to assign tasks to get the housework done, but they just get done. I wish they would understand that the exhaustion isn't just physical exhaustion, it's mental too. I wish they would realize that just because I took a nap last week, doesn't mean that I don't need another one the following week, or even the following day. I wish they would realize that I can still function and be a mom, I just need more breaks than I used to, and they need to be total breaks.
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Everything above, and Otto is tired of hearing "how long before your kidney gets better now that your on Dialysis". Some people think D fixes your kidneys :banghead; I'm tired of people thinking now that he looks better since starting home-hemo that he no longer is sick, just because he no longer looks like he's dying they think everything is all better.
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I'm thankful that my family seems to be getting the idea that when I say, "I'm tired", I am really, really tired. I've given all I can get.
For example, yesterday my mom called because we were supposed to get together for dinner out. I was driving home at the time and just before she called, I was thinking, "All I want to do is go home and get in bed and sleep until tomorrow." She totally understood when I begged off and supported that. I was so thankful. Yes, I wanted to go to dinner with her but I am just hanging on by a thread right now and she understands that. No guilt, no hurt feelings. I am so thankful.
Even my son seems to be coming around nicely to the reality that Dad can't do everything any more. When I ask him to feed the dogs or take out the trash, he actually does it! Wow! And he doesn't complain when I get into bed at 8pm!
It's my co-workers and boss that I wish could understand how difficult it is to put in an 8 hour day. Sometimes I am barely treading water before noon! They seem to be patient and understanding but I'm still expected to show up five days a week and put in my 40 hours when I'd rather be home resting. I don't say much about my ESRD because I don't want them to think I'm "sickly" but, well, I AM sickly! I'm terribly sick.
-Devon
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Sometimes I am barely treading water before noon! They seem to be patient and understanding but I'm still expected to show up five days a week and put in my 40 hours when I'd rather be home resting. I don't say much about my ESRD because I don't want them to think I'm "sickly" but, well, I AM sickly! I'm terribly sick.
Amen to that!!! I'm here at work right now, but barely functioning. I keep looking at all that space under my desk and George from 'Seinfeld' keeps coming to mind -- where he had the desk configured for a sleeping space underneath. You're right, we are terribly sick, and for me it's getting increasingly difficult to not let it show.
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The thing I most wished for from my extended family when I first started dialysis was that they would stop saying, "Golly, treatments three times a week! That's terrible! How long do you have to put up with that?"
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As others have said it, the tiredness. It is undescribeable. From my husband I heard several times, you are going to sleep your life way. The transplant was no picnic. The recovery was very step by step. The meds create chaos for other areas of your body. I try to be thankful for the gift I have been given. I also want to shake people that call off sick because they are tired or have sniffles. I want to tell them push yourself, go to work. If you have a major illness that sick time is like money in the bank.
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I agree on the tiredness. Most people are "exhausted" all the time, and I just want to tell them how my week went to shut them the heck up. I dont get a day off from my life, im physically, mentally and emotionally exhausted every day. I dont have a day off, Sun-mon-weds-fri Im at work from 2-10pm, tues-thurs-sat Im at dialysis. There is not one single day a week that there isnt somewhere I HAVE to be! It gets old fast. Thankfully my coworkers are getting better about the tired thing, esp. if I need to leave early. (I drive cars around, it would be very very bad for me to fall asleep at work!)
What I wished people would understand better is the complete devastation I feel because my body has quit on me. Its almost a betrayal, well it certainly feels that way at times. It doesnt work, there is no changing that. Yeah transplant may help but it brings with it a whole new set of problems. IT ISNT THE END ALL BE ALL... "Oh you got a donor/transplant, thats great! Your all better now right?" ... "No, dumba**, this is the rest of my life. There is not magic 'all better' for this.
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Thankfully (sort of?) my family has been dealing with this my whole life, so they get it as well as anyone who doesn't have CKD themselves can.
While I was on dialysis, I kept thinking I wish my husband's family would get it about the diet restrictions. Now that I've had a transplant, I wish they would get it that I can't eat at buffets (that includes LARGE family functions where I don't know 90% of the people there) and if they are sick, not to fix meals for me.
The big thing was my boss, though. I called in sick ONE day while on dialysis due to bad allergies, and he gave me a hard time about it. He was joking around, but said, "with all you're dealing with, you're calling in for THAT??". I don't think he realized that "sick" for me was someone else practically on their death bed.
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Everything!!!! Both physical, social, and mental aspects. When people see me they only think of me as that guy on dialysis. They dont understand that i want to live my life. In fact i can remember when the doctor told me that i need dialysis i wanted start the next day. I just didn't want it to get me down. I want live a fulfilling lifel.
Here is a list. I dont mean to be excessive.
1. I dont like being looked at as feeble or weak
2. I hated when people try to tell what I need or dont need to be doing. when they really dont know what they are talking bout.
3. I wish they would see Im 22 and i can take care of myself
4. I will ALWAYS have to deal with kidney issues including transplantation for the REST of my life
5. My mental health is equally important as my physical health. I want to be as strong(mentally) as possible.
6. My education is important to me. If i could finish my degree it would make me feel REALLY good.
7.I cant eat every food like I used to
8. Im not joking when I say i have to watch my weight even though i have a smallish frame.
9. They will never understand how i feel about kidney failure
10 I hate being told i need to drink plenty of water. They dont know I will pay for it on hemodialysis.
11. They fail to understand that i WAIT for a kidney,hence the name waiting list.
12. I dont like when people ask me "How long will you have to do dialysis"
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I don't have any close family other than my critters and they tend to be overly protective when they sense I'm feeling bad. I think they probably understand better than humans do. They love me even on the bad days.
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Everything!!!! Both physical, social, and mental aspects. When people see me they only think of me as that guy on dialysis. They dont understand that i want to live my life. In fact i can remember when the doctor told me that i need dialysis i wanted start the next day. I just didn't want it to get me down. I want live a fulfilling lifel.
Here is a list. I dont mean to be excessive.
1. I dont like being looked at as feeble or weak
2. I hated when people try to tell what I need or dont need to be doing. when they really dont know what they are talking bout.
3. I wish they would see Im 22 and i can take care of myself
4. I will ALWAYS have to deal with kidney issues including transplantation for the REST of my life
5. My mental health is equally important as my physical health. I want to be as strong(mentally) as possible.
6. My education is important to me. If i could finish my degree it would make me feel REALLY good.
7.I cant eat every food like I used to
8. Im not joking when I say i have to watch my weight even though i have a smallish frame.
9. They will never understand how i feel about kidney failure
10 I hate being told i need to drink plenty of water. They dont know I will pay for it on hemodialysis.
11. They fail to understand that i WAIT for a kidney,hence the name waiting list.
12. I dont like when people ask me "How long will you have to do dialysis"
Well said, I would agree with that entire list!
EDITED - fixed quote error - Bajanne, Moderator
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EVERY time I talk to my grandmother she asks me if I've heard anything from the transplant center about when I will have a kidney. I know she means well, but I have tried to explain that I have NO idea when a kidney will come up, what the average wait time is, etc. EVERY TIME!!! :banghead;
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I wish hubby's sister would stop saying that hubby is sick!!! :banghead; He's not!!! last year she even suggested getting her church to give him a hamper because he was sick. Hubby told her not to . we are not in need for anything like that!! Someone who didn't have much money and a family of kids could use it a lot more than us. I would not have accepted it if they had brought it. He does dialysis but he does everything else as well!!! She didn't want him to do nocturnal because she was afraid something to happen in the night. His mother is the same way. She lives with us and said she was afraid for him to do nocturnal. She had absolutely nothing to do with it. For the first few months if the machine alarmed she would come out of her room asking if everything was ok and if she could help. Hubby had to tell her (or maybe it was me) to stay in her room and ignore the alarms . Hard enough to figure out trouble shooting first when we started without having someone who knew nothing about it trying to help. His sister wasn't one to offer to go to treatments with him when he was in center!! His mom always talks about his "bad" arm because the fistula is there!! Hubby keeps telling her that is his GOOD arm.
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I more or less agree with everything that has been said. My family has dealt with dialysis before, so there is not much ignorance shown them. But I am not living in our home country and I started dialysis here. One thing that friends did not understand is that dialysis is not just therapy. My cousin who used to take me to dialysis always calls it 'therapy'. "What time your therapy is going to finish?" I have to tell them that it is not therapy, it is life support!
My problem is also with the dialysis staff, from a different point of view. They seem to want me to make this the only thing in my life, just because it keeps me alive. When i want to shift my session so I can get to go somewhere a weekend, they make it seem that I am not aware of the seriousness of dialysis. When I want to make sure that my computer connection (laptop) is plugged in before I go on the machine, that can be a problem. It is as if you always have to fight to prove that your life is much more than the dialysis session. I spoke to the supervisor and told her that we don't only need physical help, but our emotional and psychological state is also very important.
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I'd want them to know how ESRD is just as devastating emotionally as it is physically.
Amen...Boxman
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:thumbup; :thumbup;
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I know for my husband.. it's for his mom and siblings to STOP harping on him to get another transplant.
He's not ready for it emotionally, we don't have good insurance for it.. he doesn't WANT a transplant right now.
His mom keeps saying "I'm giving you MY kidney, I don't care if the doctors say no."
umm, she has hypertension and a mystery illness that causes dizziness/blackouts.. why would anyone want her kidney??
:banghead;
She also made a big deal about not wanting to see the NxStage set up, sorry you don't want to "deal with all that" but we need to everyday. Darn if we aren't happy as can be to do home hemo and want to show off a little. :cheer:
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My family is pretty weird and friends are obsolete since I have taken care of my mother for 5 years. A few siblings/ in-laws just want to gossip about my "condition", but not discuss it with me, unless they have further gossip questions. :rofl; My brother that lives in the same state as me doesn't believe that anything is wrong with me...just think positive and it will be ok..... :Kit n Stik; Needless to say, he has never returned my call about helping with my mom's post-transplant appts., since they are 3.5 hours away, so I have still have to take care of her and myself. :rant; Those are some seriously long road trips, not to mention procedure and wait times (12 hours and then the trip back home) !! I am thankful that I am not dealing with the major side effects YET that most on here have and that my husband is very supportive and always there for me.
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My sister once told me that her goal was to make me better. Therefore, she would pray for regeneration. I want my family to understand that there is no 'getting better'.
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I have two friends that pray every day for my kidneys to regenerate. If it were that simple, we would all have working kidneys. I know they mean well, but it is frustrating. Help me clean one day, or give a hand when things are overwhelming. That wouldl make a difference in my world.
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Jenna's great-grandmother would say "Oh don't worry dear, she'll get better soon." ???
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I love my brother -- one of the really good guys. The other week he asked if I was feeling better. I think people just don't know what to ask or even if they should ask. I'm going to have xerox copies to hand out to everyone---stats, numbers,lab results, transplant center info------- :rofl; :rofl;
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I have to say that between this topic and the :Ignorant things people say to you" topic, I find that most of the comments either from loved ones or from friends is just a matter of them not understanding what we are going trhough, and have never known anyone that have kidney failure. Therefore I don't think 90% of the comments or questions are unreasonable at all they just don't know are are not trying to be rude or ignorant. i personally never have taken any of the questions like "Are you on a list to get a transplant" or "When are you going to feel better" or the big comment "I wish I had a machine to help me lose 10 lbs in 4 hours." I understand that they don't mean to be nasty by saying these things or how we feel when we have too much fluid to remove. so just take it as it is and not bark back at people.
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I think most of us just smile and say "I'm doing great". I certainly am not rude to friends or family. But it is nice to come here and vent frustration.
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I was just relating to many of the replies I have read.... hope I haven't offended anyone.
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That is the great thing about IHD, we can all put our feelings out there. :2thumbsup; You have a very good attitude and may be able to help others through their frustrations. :grouphug;
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What do you wish your family understood about kidney disease?
I wish they wouldn't get mad when I tell them I can't go out to lunch with them b/c the food has too much salt, phos, potas, etc...in it.
I wish they wouldn't call me on MWF 3-7 and ask what I was doing. (Uhhh, the same thing I've been doing every MWF for the last 4 years)
I wish friends would understand I'm not just blowing them off every Friday. I just don't feel like going out after working all week and then dialyzing.
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I have noticed recently that when I feel good and it shows............and on days when I feel bad it shows, that family thinks I am just being moody on the days I feel bad, its not me just being moody...........its just that I don't freaking feel good!!!!! :-\
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I think a big problem with family and espically friends is that "most" not all look very good health wise compaired to how we feel.
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Your right Jay72, people always say man, you look real good are you better. Ugh ...Boxman
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It is a very lonely feeling always having to explain and never having someone who just understands. :(
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Catears,
YES! good point! Very well said!
Devon
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I wish my family really understood what I go through when I contemplate the issues of:
1. What kind of dialysis should I do when I have to start?
2. Should I have a pre-emptive transplant and take my 59 yr old sister's kidney with High blood pressure?
3. Could I take a cadaver transplant knowing it requires me to think,in tha back of my mind, someone out there has to die young and healthy for me to get one?
4. Maybe I'll die first and these decision will never be made?
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I wish my family would listen to me when I tell them what I want for my funeral and wake. I tell them but they do not want to even think about it. My mother will get one heck of a surprise when there is a party going on instead of a funeral service.
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I wish my family would listen to me when I tell them what I want for my funeral and wake. I tell them but they do not want to even think about it. My mother will get one heck of a surprise when there is a party going on instead of a funeral service.
Write it down and seal it an envelope marked "Open only in the event of death."
That's what my mother in law did - and inside it said she wanted to be buried, not cremated; and she wanted me to have her jewelry.
Shocked me. She didn't feel they were big enough things to add to her will, but she wanted to be sure her 4 sons knew what she wanted.
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Done Wishing, I do Praying now........
I Pray that when People call and ask Where He Is and I say " Dialysis " they don't Sigh.
I Pray that when they call back later and ask for Him and I say " Sleeping " they don't Sigh.
I Pray that when they call on His off days and ask for him and I say " Sleeping " they don't Sigh.
I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.
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I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.
That was pretty good. I would like my husband to know how much I appreciate everything about him - his never-failing understanding of my condition, his willingness to dedicate a good portion of his life to helping me with my treatments, his tender kisses on my forehead during the treatments, but mostly his devotion and love. I am blessed.
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aaaawwww those are blessings for sure cherpep! You truly are one blessed lady!!! I am happy for you!!! :cuddle;
~Tammy~ :bandance;
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I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.
That was pretty good. I would like my husband to know how much I appreciate everything about him - his never-failing understanding of my condition, his willingness to dedicate a good portion of his life to helping me with my treatments, his tender kisses on my forehead during the treatments, but mostly his devotion and love. I am blessed.
Same to my hubby. God bless the lot of them for putting up with us!
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Thanks okarol..that is what I will do since no one wants to know.
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You are right, Kitkatz, no one wants to talk about "plans". I finally wrote things down, because I just needed to put things in order for my own peace of mind. Once I did that, I could forget about it.
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:thx; Related thread - thanks to the members who agreed to be quoted. http://ihatedialysis.com/forum/index.php?topic=10719.0
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i wish the uncle who thinks he knows all about it wourld realize that he doesn't and leave my mother alone!!!!
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I just wish they understood that just because I don't "look' sick and/or "act" sick doesn't mean that I'm not sick. Same goes for scared, depressed, sad, anxious, etc. I have found that I can hide those feelings pretty good even though I suck at hiding other feelings and emotions.
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Don't you think we are all becoming good actors?
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all tho I'm not on dialess yet . i wish my family and Friends would just let me tock . it's like if I even think of my CKD or thy ask where I'm going and i say the kidnes dr. thy freek out I'm not diying today nor am i going to be healed ether. i wish thy got it CKD JUST IS good days and bad days .
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okarol - thanks for this thread and your summary. I printed your quotes on my caringbridge site, and have received several comments from my family. It was very informative to many of them - simple and informative. Thanks!
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okarol - thanks for this thread and your summary. I printed your quotes on my caringbridge site, and have received several comments from my family. It was very informative to many of them - simple and informative. Thanks!
That's great! i would love to visit your caringbridge page, would you PM it to me if you don't want to post it? Thanks.
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:bump;
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I think people not understanding the extreme tiredness is one of the hardest things to deal with. When I say I'm tired, I'm REALLY tired. Even now, as I'm getting closer to dialysis again, I am SO tired. I have a hard time getting everything done. I am a single mom to two toddlers and to work all day with children and then come home and clean, and do baths and playtime and then when it's time to put them down I'm done for the day. It gets harder and harder to keep up with it all.
I had an Aunt once tell me, "Gosh you were so lazy as a kid. All you ever did was sleep your life away. If you come visit me, you're not going to sleep all day!" :o I could have slapped her. I said, "Well let's see, I was in kidney failure." Duh!
People just really don't get that and it sucks!
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I think people not understanding the extreme tiredness is one of the hardest things to deal with. When I say I'm tired, I'm REALLY tired. Even now, as I'm getting closer to dialysis again, I am SO tired. I have a hard time getting everything done. I am a single mom to two toddlers and to work all day with children and then come home and clean, and do baths and playtime and then when it's time to put them down I'm done for the day. It gets harder and harder to keep up with it all.
I had an Aunt once tell me, "Gosh you were so lazy as a kid. All you ever did was sleep your life away. If you come visit me, you're not going to sleep all day!" :o I could have slapped her. I said, "Well let's see, I was in kidney failure." Duh!
People just really don't get that and it sucks!
Beth, people don't understand often because they are not informed. As hard as it is, we must teach them about kidney disease. A long time ago, I used to give printed info (there's lots on this site) about the symptoms and effects of this illness. We should'nt HAVE to educate them but it's in our own best interest and I've often been surprised by the turn around in some people's attitudes once they "get it". Next thing you know, the formerly ignorant are explaining things to others.
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I wish they all understood the concept of limited energy. Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after. When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.
Couldnt agree more people just dont get it, one day i can have energy and than the next minute im tired as hell. I hate feeling like people are doubting me or even think im lying becasue Im young and i quote"look healthy'
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jbeany and neo..you are both very right..I try to look like I can run a marathon and clean 10 houses in 10 minutes but that is just it...."""look"""..the minute someone looks away I am on the couch resting for the next """look""" :rofl;
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I just wish they understood that just because I don't "look' sick and/or "act" sick doesn't mean that I'm not sick. Same goes for scared, depressed, sad, anxious, etc. I have found that I can hide those feelings pretty good even though I suck at hiding other feelings and emotions.
Kelly .... this is sooo me. I wish my friends and family could live in my skin for just a day. I am sure they would then understand the crap I live with on a daily basis.
I just feel spent. :stressed;
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I wish they all understood the concept of limited energy. Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after. When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.
I couldn't agree more about the limited energy! I also wish folks would understand the emotional effects. I'm so thankful my wife understands me!
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I wish my husband understood that I feel like crap and/or am very tired a great deal of the time, so I am going to be "bitchy" sometimes.
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Paddbear you are absolutely correct. People don't seem to understand that you get tired then everything starts to irritate the hell out of us... And we in turn become bitchy... I totally agree..... I wish my family would educate themselves about this disease so tha they know what I am ging through emotionally and Physically.
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just because I found the energy to sweep and mop 6 1/2 rooms downstairs does not mean I will have the same energy tomorrow
if I have an energy day then I pay for it the next day >:(
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I helped a friend with a childs Birthday party on Saturday and they yesterday i felt like I could sleep all day.. I was exhausted. I used to only need 4-5 hours of sleep a night now I require 8-9 hours every night... If I sleep past 7am I feel bad becaseu I should be cleaning house or something else.
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After 8 years of kidney disease in my family, my mom just now asked about getting a green awareness bracelet to wear. I wish they understood that this is part of our lives and their support would sure be nice. I know, better late than never.
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After 8 years of kidney disease in my family, my mom just now asked about getting a green awareness bracelet to wear. I wish they understood that this is part of our lives and their support would sure be nice. I know, better late than never.
Karol if you count your Dad (her husband) it is a lot longer than eight years. Oh and there are your siblings with PKD too. :banghead;
:cuddle;
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Yup - she's obviously been living comfortably in denial for a long time.
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De Nial= the most populated city in Egypt?
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no kitkatz it is a country - western song
Queen of Denial -- I can't remember who sang it
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Twirl, her comment about Egypt is a joke. When someone makes a comment about being in denial, you say "de nial" is a river in Egypt (the Nile River). Haven't you ever heard that before?
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no kitkatz it is a country - western song
Queen of Denial -- I can't remember who sang it
Pam Tillis? I think................
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Knowing Twirl's sense of humor---I think she was joking right along with Kitkatz. We are all in a sinking boat going down the River Nile. :rofl;
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There should be a rule that if you are joking, you must use a winking smiley! It is so hard to tell whether people are serious or not when you can't hear a tone of voice or see the expression on their face!! ;D
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:bump;
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I have one friend I see every Tuesday night at Bingo. She always says how are you and I always say, pretty good, how about you. Then she tells every body to pray for me, because I am lying!!!! She has a distorted sense of humor also.LOL However, she also does not really want to know how I feel either.
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I REALLY wish that they could just feel how tired I am ... Just for a day... damn even a half an hour.
I cannot do "everything" any more.
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Everything and Anything .
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Yep!
NOTHING, NADA
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What an interesting question?
That it is a disease like any other and that I will cope with in but had rather not spend too much time talking about. Do I want to be treated special? Well, didn't I always? What do you think?
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After reading a post, I want them to know how the Needle Stick feels without any "chicken juice" and then a few days or weeks on the machine so they can experience all the going ons in the clinic and have a hard time resting ;D
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What I would like my family to understand about kidney disease?
That I may feel like doing something right now, but may have to change my mind, within the hour because I am totally out of energy.
That I have to respond to them - that yes, I am still doing dialysis three times a week for 3 1/2 hours at a time.
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I agree with everyone's issues...especially the tired thing. I do not wish this illness on anyone, but sometimes I just wish my Mom, sister or certain friends could feel a minute of our sort of "tired". I think they would finally cut me just a little bit of slack.
Pklipe57 - I have so many people ask me that too!!! Isn't that crazy?
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I wish they could understand what it is to have a true permanent change in life, something that you can never take a brake from. having kids is the closest thing I can think of but you can always get a a babysitter and you know kids will grow up. I also wish that they could understand what it is to truly be scared of your own body .
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I wish our family and friends could understand that even though Jenna has had a transplant, the reality is that kidney disease is going to always be a part of our lives. Her transplant is a blessing and she's been very fortunate that it worked out so well, but there are no guarantees about how long it will last.
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I wish my friends and family would understand that if I get a transplant it is not a magic cure. I wish they would understand that I will have kidney disease for the rest of my life, no matter what.
The other day my boss asked me if I woulf be done with dialysis in about 6 weeks or so :rofl; I forget sometimes that some people have no clue about all this.
I wish my parents didn't think they need to drive 3 hours just to rake my leaves...thanks but I am capable. It just might take a little longer than it used to, but I will get it done! And when I do, I will thank God for giving me the energy and the exercise ;D
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I wish they would understand that my brain and my mouth are not aware that I have kidney disease. Because of that, I often say, oh, yeah, I would love to do that and when the time comes, I am too tired to go and hate to keep saying, I am tired.
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I wish my boss would understand that I cannot plan my illness around the month-end schedule. I wish I could. A kidney stone cannot be scheduled or a kidney infection cannot be postponed. I wish he would understand that I do not get sick because I like it. I hate it just as much as he does.... more so... because I am feeling it too.
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I wish my MiL would stop smoking so that she doesn't have to ask my Blokey to drive oodles of miles to buy her cheap cigarettes in Belgium four times a year, and make him feel guilty for not wanting to do it. I also wish she'd realise that making concrete non-refundable plans six weeks in advance is not going to mean that Blokey will be able to tell his body/kidney's not to play up that day!
I love this thread and can't believe I've only just read it; it's opened my eyes quite a bit.
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I wish my Mom would realize my kidney disease didn't suddenly disappear.
She NEVER asks how I'm doing. I do mean NEVER! She seems to think if I look okey things are all better. I almost don't even want to talk with her anymore. It's all about being in an up mood and pretending everything is fine which requires so much energy of me that I don't even want to talk with her let alone actually be with her. Last night I did visit her and I got nothing from her. No words of encouragement, no acknowledgment of my health issues, just fluff talk about gardens and such. I give up!
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I wish my Mom would realize my kidney disease didn't suddenly disappear.
She NEVER asks how I'm doing. I do mean NEVER! She seems to think if I look okey things are all better. I almost don't even want to talk with her anymore. It's all about being in an up mood and pretending everything is fine which requires so much energy of me that I don't even want to talk with her let alone actually be with her. Last night I did visit her and I got nothing from her. No words of encouragement, no acknowledgment of my health issues, just fluff talk about gardens and such. I give up!
I hear you Sunny! Often my parents call "to see how I am" and the entire conversation turns into me trying to encourage and reassure them instead of the other way around :'( Then, for whatever reason, when I do get to see them, they don't even ask how things are going when we are in person but instead they talk about anything and everything else. I have to continually ask God for patience and understanding with them, and remind myself often that they aren't being insensitive on purpose, but that they love me and are scared to death by my CKD. Maybe I would be more understanding if I was a parent myself :) Hang in there and I pray that God will bring you caring friends who aren't scared to talk about tough things and want to be there for you no matter what.
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I wish my in-laws would finally believe that there is no cure for PKD and to quit bugging me to go to some quack that can "cure" me. Of even if they never believe it, at least don't treat me like its my fault that I'm not willing to get cured.
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Yah, the worst thing is having people think it's your fault for not finding that "cure" or that you must have caused it somehow.
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I wish everyone understood my diet isn't a weight loss diet... I'm not aiming for lower calories! My mom understands, but she's the only one. I mean, I don't want to go crazy on calories, but that certainly isn't an issue (sometimes I don't get even close to the calories I need- but I do try!) When I say "I can't have that macaroni and cheese" or whatever it is, I get so upset sometimes when they say "oh I used non-fat cheese so it's low calorie" :banghead; I hate being rude, but sometimes I get so frusterated I just want to yell! I wish people understood that the renal diet is different than most diets out there.
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I wish my family understood that this isn't a temporary event in Jenna's life, that kidney disease is a life long problem that she will have to deal with.
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Sadly, my family is all too well educated about kidney problems. My mother is on dialysis because when she had an aortic aneurysm repaired, the surgery killed her kidneys. I have a cousin whose kidney function was destroyed because of untreated hypertension; luckily, he has had a transplant. My husband now knows his phosphorus from his potassium and even laughs at my occasional renal comedy. So I have not had to deal with stoopid family members.
I can't believe some of the posts here, that there are people really so thick.
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I wish my work had understood that when I need a vacation I really need it. They pushed back my vacation twice then on march 31 first threatened to push it back again. I was pushing myself through each day counting on the rest I would get from my vacation. April 1, I went on medical leave. I could have kept working if I could have just gotten some time off.
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Luckily my family is pretty understanding, my friends however....
1. I wish they understood that I Have PKD and that's what caused my kidneys to fail. Most of them assume it was diabetes, and because I am a little overweight that if I had "just watched what I ate better..." I wouldn't be in this position. I'm not diabetic!!!!
2. I wish that my friends and family understood that dialysis is hard. Yes, I'm just sitting there for four hours, but I'm not ready to go out and party when it's over. I'm tired and sick. I usually feel exhausted and have a headache. Bad days might have me cramping. I wish they understood that dialysis doesn't replace your kidneys. They seem to think that once you start dialysis, you'll feel "normal" again.
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I wish my family understood that I feel crappy more often than I feel well... I wish that they understood when I say that I am too tired to do something that I really cannot push myself any further and that everyday things that they take for granted are often accomplished by me through pushing myself hard.
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I have to agree with the one day just to come home to the house being clean, I don't have the support of a spouse, but I have 3 children who are very aware of how tired i get, but they don't help the house it dirty they wait for me to make dinner and clean up even if it means I can't get on my machine until 7 or 8 at night and if i say something they always say why are you so upset the house is fine, yet if cps came they would take the kids or I feel that way, My sister is coming over this weekend to help me clean and I feel so bad that she is doing that it makes me feel like I can't take care of my own home
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Echoing what some other posters have written, I suspect that my husband doesn't really understand that I have an incurable illness....I mean REALLY understand it. I've told him that a transplant is merely a treatment, not a cure. He intellectually understands that, and he intellectually understands that there is a very real risk that fsgs will attack a new kidney, if I am fortunate enough to get one, but I don't think he understands it on a more emotional level. Or maybe he just chooses not to. It's not easy to have to think along those lines, and if you're not the one with ESRD, you don't have to.
However, I don't really need to have anyone understand. It's just not that important to me. There are many awful things that happen to people that I won't ever be able to really understand, so I don't expect the same in return. It doesn't necessarily mean that people are stupid or insensitive, rather, it is more likely to mean that they just don't have the same set of experiences. If you've never had a disabled child, you could never understand what that does to your soul. If you've never had an incurable disease, then you just can't know how that feels. If it's someone that I love, I wouldn't WANT them to have the experience that would teach them...
The diet thing, though, is a problem. Let's face it...when most people hear the word "diet", they think in terms of fat, sugar and salt. They don't think in terms of potassium and phosphorus. The renal diet is really pretty weird.
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I do feel that I need people (the ones closest to me anyway) to understand what I'm experiencing, not to pity me, not to excuse me, but to maintain the connections that we share beyond the merely superficial. I play a role in public when I'm ill because I don't want to suck anyone into the vortex of what I actually experience in the moment but I guess I do expect or at least greatly respect the efforts to truly understand, of those with whom I share my life.
I also feel the need to do my level best to try on the experiences of others too...I find true intimacy in these attempts to bridge the distance between the isolation of our individual experiences. My next door neighbours have a profoundly handicapped daughter...diagnosed as autistic and born without some connective tissue between the two sides of her brain. Our relationship was on the pleasantries level until the day her mother explained to me what had happened. I had a thousand questions and she answered them all, including some tough ones about the decision to have a second child. We both had a good cry although we barely knew one another. When I worked as a family therapist, I really felt privileged to be allowed entry to people's deepest secrets, fears, hopes and dreams while at the same time feeling tremendous relief that I did not have to personally go through some of those particular struggles. I worked also with parents of developmentally delayed kids and learned so much from these people about courage and love and patience and on and on. Those that felt I helped them may never know how mutual that process was. We weren't able to have children and although not a choice and for several years a source of considerable sadness, it was understanding that parenthood can present as many huge challenges as joys that helped me make peace with the set of circumstances that I was personally dealt. I never want anyone to have to experience ESRD, not even people I'm not especially fond of, but I'd like them to try to understand the road I walk and I'd like them to feel that I do the best I can to enjoy life in spite of how difficult it can be.
Funnily enough, I'm far less interested in the details of people's "happiness" or joys. I find struggles much more revealing and most people will struggle with many things throughout their lives. I feel glad and pleased for them when people have good fortune, are in love or whatever else is in the happiness category but struggle builds character and I find people's ways of coping endlessly fascinating.
PS. I don't detail my particular struggles unless someone shows some interest...you're absolutely right that they don't have to face them in their own lives and it's their right to remain blissfully ignorant if they so choose. And of course anyone's attempts at understanding anything from an outside perspective is partial at best...heck even those of us who share the main issue of ESRD experience it differently and cope differently.
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While I was still living in London, I volunteered and trained for a group that offered support to parents with children who had been just diagnosed as having special educational needs. I came across a wide range of people who dealt with this particular spectre of despair in different ways. Many of these parents felt profoundly isolated, and it is the loneliness that accompanies personal tragedy that I have always found to be the most crippling.
I've always been fascinated by this idea that struggle builds character. I don't know if that is always true. I think that perhaps struggle magnifies the character you have been endowed with. I've seen people of great courage and determination shine in difficult circumstances, but I've also watched people disintegrate under pressure, particularly when they have not been blessed with a good support system. Many people are transient and don't have the advantage of having lived in a place long enough to be able to build that system; if they are strong, they reach out and start building. If they are not, then it is harder for them to be resilient.
I wish I needed people to understand. I wish I had connections to maintain, but life is funny; sometimes you just don't get the chance to make those connections; you miss out precisely because those personal tragedies present logistical obstacles. When you have a chronic illness or when you have a disabled child, you seem to automatically be relegated to the "other" status, and isolation is oftenh thee result.
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Monrien, do you ever wonder about the people who you DIDN'T see in a family therapy context? I may well be wrong, but I assume that people who reach out for assistance may be those who are already quite strong and self-knowing to begin with. It makes me wonder about those who are struggling and aren't able to get help for whatever reason...money or pride or fear or refusal. Not everyone is blessed with love, patience and courage...I wonder what those people do. What do you think?
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Monrien, do you ever wonder about the people who you DIDN'T see in a family therapy context? I may well be wrong, but I assume that people who reach out for assistance may be those who are already quite strong and self-knowing to begin with. It makes me wonder about those who are struggling and aren't able to get help for whatever reason...money or pride or fear or refusal. Not everyone is blessed with love, patience and courage...I wonder what those people do.
Absolutely MM I wonder and also worry about those who don't get the help that could make a real difference in their lives. I worked in an agency whose mandate was hard-to-serve youth, which meant that most did NOT want to come for counseling. Some were court mandated, some were child protection cases, some were referred by their schools (I also consulted to the guidance department of a high school) or by hospitals following suicidal ideation or attempts and so not many of my clients came "voluntarily". My job was to reach out and connect with them and I certainly was not always successful. Our agency used to put a strong emphasis on outreach and I had one 16 year old client who refused to meet with me since she was very distrustful of all mental health folks...and with good reason. I accepted her refusal but told her I'd call every Thursday at 2 pm and she could not pick up or she could tell me to F off one more time or she could meet with me if she chose. I did that for about 6 months, every week until the day she decided to meet me and we worked together for a couple of years after that. Pride, shame, anger, hurt, previous bad experiences etc etc were real barriers and the biggest thing I learned was the error of passing judgement on others. So useless and so incorrect in the underlying assumptions most of the time. Money was not an issue with regard to therapy itself as our agency was government run but the wait list was a hurdle and of course lack of resources is a huge factor in people's quality of life and the opportunities available to them in general. You're so right about the isolation piece and the immense fatigue that comes with the primary struggles can make it just to hard to access help.
My colleagues in private practice are the ones who often end up with the highly motivated clients who can afford the luxury of ongoing sessions. My view generally is that while almost everyone could benefit from periodic counseling, endless therapy seems weird and my goal for clients was generally to see them get back into living more functionally.
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Oh Monrein, it must have been so satisfying for you to have been able to help so many people in your life. It is so easy to pass judgment on people despite having so little evidence...having only assumptions and superficiality to draw upon.
You can't make people trust you, but I am so glad that your 16 year old client allowed herself to do so. Wouldn't it be wonderful if everyone on IHD had their own personal Monrein to help them through this very difficult disease? You could help make a lot of IHD families more functional!
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What do I wish my friends and family could understand? I am tired. With working full time and in center dialysis, I am just pooped. I know other people have mentioned fatigue in this thread, but it is worth hitting again.
Most people, when they hit the "wall" can take a break, have a cup of coffee and a change of scenery and go back to work as good as ever. When I hit the wall, I am done for the day. I have no energy reserves to fall back on.
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I wish my mother would not think im Superwoman and change her favourite saying of ..'oh you will get it done/sorted/finished' to ..'so do you need me to come and help? '
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Kickstart, what would your Mum's answer be, do you think. if you straight out said "Mum, I know you're busy but could you come and give me a hand with this sorting and cleaning...just one morning or afternoon would be such a big help."
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:bump; For those who may not have seen this.
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My family is pretty understanding, for the most part. I'm more worried that something might go wrong with the transplant when I get it, and I don't think a lot of the family understands. Friends, on the other hand, seem to basically understand that i'm sick....VERY few understand that dialysis is no picnic, very few come visit...a couple said they 'didn't want to see me like that'....and, well, it's not like I have a choice in the matter:-(
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very few come visit...a couple said they 'didn't want to see me like that'....and, well, it's not like I have a choice in the matter:-(
::)
What a cowardly copout.
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Yes, it seems as though many of our "friends" and family members would rather stay away than see us in this condition.On the other hand, sometimes I'd rather stay away than allow them to see me on my more difficult days.
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I wish my mom understood that when I say I have had a bad week and have been feeling super tired that she believed me. I swear she thinks I'm just lazy and it kills me. Within the past few weeks I have had several parties at my house for things like birthdays. My house was spotless and I worked hard for it to be clean. But I have two kids and this week I have been feeling lethargic and have not been able to do a good cleaning. She came over yesterday and asked why I didn't do this or didn't do that. She says, "What have you been doing all week?!!" This, after I told her several times during the week that I had not been feeling well.
Uhhh, it makes me so upset.
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The same mostly, as u all posted, about being tired.
Also, when I tell them i cramped at dialysis,and they say,oh yes ive had charlie horses! heh
Or offering a drink, or someting that was not on my diet. I have a hard enough time with that!
"your so lucky u dont have to pee all the time!"
"Oh i wish i didnt have to work all the time!" i personally miss working! been working since i was 15!
And lastly, "What do u have to be stressed out about??"
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I am getting ready for round two of out of state company. Everyone says "don't go to any trouble". Really? Just sweeping and dusting wears me out. So, I wish when they come to visit, they would be helpful, offer to go out for dinner so I'm not cooking. Understand when I go go bed and don't stay up until midnight visiting. Ask "what can we do for you before we leave?" I know, I am complaining. I am also on the computer when I need to finish getting ready for them. Fresh sheets, breakfast foods ready, cold drinks, clean towels -- what am I forgetting?
I'll let you know what comments they make that get on my nerves!!
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im sorry paris!
Im lucky, family never visits me, unless they want to B**** at me about something heh
and when i visit them, its a neverending parade of WTF?
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I think I"m going to make a sign that says "just because it's good for you doesn't mean it's good for me" and put it up in the kitchen, so that when Dad is here on my dialysis days and he sees me going with the sandwich I made with white bread and he says "why didn't you use the multigrain bread? It's better for tou than that crap," I can just point to it and not say a word.
Dad's been on a bit of a health kick in the last year or two, and it's done wonders for him. He's lost weight, and he looks great, but he just can't seem to grasp that I can't do what he did, and that all the cereals and trail mixes and whatever that he seems to live on are complete no-nos for me. What I really don't understand is why he does it. When I started dialysis at 12, he went to all the training sessions, where they teach you how to care for your kid now that they're on dialysis. He knows the reasoning, or at least he did. Maybe since it was 20 years ago, he just doesn't remember. *shrugs*
I have a friend, a really great, awesome friend, and we unload all our crap and vent to each other. I told her about this one day, and she told me that the next time he tells me I shouldn't eat something, and tells me I should have something I know is on my no-no list, took at him square in the eye and ask him why he wants me to die. It would definitely stop him in is tracks. It's a good thing he's only here about once a week to do his laundry.
To his credit, though, there are days when he sees me going with hotdogs. I know they're not good for me, but they are my weakness. We all have to have one vice, right? *L*
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with the white bread thing, I'd just show him the phos(I think) list that says White bread is better than wholemeal or multigrain. I have one at home the dietician gave me years ago and I keep it handy should anyone abuse me for getting white bread(luckily my cat doesn't care what I eat :rofl;). It sure surprised me to see on the list specifically that white was better than the others.
It's kind of like the people who yap on "oh you need to drink eight glasses of water a day" ummm..... you trying to KILL me??! :rofl;
it's sad when those close to us can't understand that we have to live by different rules.. and even if they don't understand what those are, to respect that we're following a specific diet for reasons - and not hassle us about it. It's bad enough when we WANT that stuff and can't have it then to have people around us giving us grief about it too!
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Dad was getting at Mom one day for buying white rice instead of long grain brown rice. He kept going on about how it's better for you, and Mom would say, "yeah, for you." We just couldn't get through to him that I couldn't have the whole grains. What's sad is that Dad doesn't even live here anymore. He moved out in November, but he comes by once a week or so to do his laundry.
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I wish my family understood that although Jenna is currently stable at about 15% - 18% kidney function, she still is not "fine." :urcrazy;
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I was arguing with my brother,and was real upset. My friend said to me and my husband'well he will have to learn not to talk to u that way,and be more supportive cause u dont have the time or a regular life span like normal people! Omg! What are people thinkin!? U can live many years lmg as u follow the plan.
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For me it is the tiredness, I truly do not think that people realise how ill and tired I feel sometimes because I am doing my very best to maintain as normal a life for me and my family as possible. I push myself to get through the days at work after getting home from Dialysis at 11pm or so but then I am zonked on those evenings I am home or at the weekends. I would also love to have a wonderfully tidy and neat home but I just can't seem to find the energy to tackle it after being out at work all day.
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I'll add on to my previous post a page or so back.
I wish my family wouldnt look at me like I'm going to break in half or something. Last weekend, my dad and stepmom were here, i went and saw them after dialysis, and i swear everybody looked at me like i was death warmed over(though I DID feel like it...). If one more person asks me about the transplant, i may scream...I'm getting all the tests done the best I can.
They also don't understand my 'need' to be working. I'm graduating college in December, and will be looking for work. Don't know how I will do, or what I can find, but I know that just sitting home will drive me crazy, and I also dont want to stay with my parents forever!!! My Dad(who has always been overprotective...lol), has been having fits about me moving out with roommates and working(as close to a normal life as I can get....imagine that!!!)
I do need a vacation, though. Been going nonstop at this school stuff since last fall, and between school and dialysis, I am extremely busy...and I am getting burnt out. Today I came home from class and didnt get off the bed til dinner time...wasted a nice afternoon, but the energy just wasn't there:-(
Ok, I'm done whining...gotta be up early, and need my zz's....
Thanks for reading!
-Mike
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I've just spent a good half hour reading this thread and wanted to comment that it's reassuring to read that everyone is tired. I, too, go hard when I can and then have the couch days. The only one who really gets this is my long suffering hubby, who just lets me do my thing and NEVER says, Hey, get up and get busy! And I get the guilts about what I should be doing. Some days I get sad at how lazy I am. Our two girls are great, always looking out for me, mentally and physically.
The rest of my family understand pretty well and I have a sister that's about two years behind me with the same disease, PKD, although she's two years older. I try to be upbeat for her. How hard it must be for her to see me struggle and know that that is where she is most likely heading. And my Mum had four years with my Dad on haemo before he died - so glad that I'm on PD: makes it a bit easier on my Mum.
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My family understands all too well, what I am going through.
I have some "idiot" people that I work with, who think that it is fantastic to be able to work 1/2 days on MWF, and just sit in a chair and watch TV / sleep for 4 hours!
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If one more person asks me about the transplant, i may scream...I'm getting all the tests done the best I can.
And when you get a transplant, they will think you are immediately "cured" and will wonder why you aren't out doing more, going on vacation 6 weeks post when I still feel like napping some days, etc, etc, etc.
I know I shouldn't rant, I but need to release some of this frustration. The clinic thinks I am doing great and thinks I should do things at my own pace. So I am!!
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I went to an open market with lots of stalls. One lady were selling a oil that you rub on sore muscles. I asked her if you absorb all the stuff in it and if it is dangerous to kidneys. I told her I have kidney failure and I need to watch what I use. She told me that someone somewhere used this product and it actually made her pee more. I told her all good and well but I have kidney FAILURE.
I just walked away..... she didn't get it.
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I've stopped caring if people "get it." There are awful things happening to other people that I will never "get", so I figure it's all swings and roundabouts. I have access to people on IHD who "get it", and frankly, that's all I need.
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I've stopped caring if people "get it." There are awful things happening to other people that I will never "get", so I figure it's all swings and roundabouts. I have access to people on IHD who "get it", and frankly, that's all I need.
:clap; Couldnt have said it better... I second that notion lol :clap; :bow;
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Me too!!! My family does get it that we don't visit because we can't!!! It's a five hour drive and hubby does nocturnal so that's only one night off. I work (usually) so the only time we have is on weekends. We have been isolated from them -sort of. They don't visit don't even phone because we don't visit them!! They don't understand the first thing about dialysis. Most have absolutely no understanding of kidney failure. My brother and his wife visited for a few days this summer and they sort of realized a little of what we go through. Hubby only has one sister and she doesn't understand. She doesn't even call or ask him how he is doing anymore and she only lives about 2 minutes away from us!! She has sort of made it clear that she wants nothing to do with us since their mom got sick and had to go in a nursing home. She took her to look after her for a few months and she couldn't handle it (their mom has alzheimers) but she expected us to be able to keep looking after her. Hubby actually made the decision that she go in a nursing home because even after she went to live with his sister his sister wanted him there all the time looking after her and he just couldn't handle it anymore.
None of our family understand what kidney failure is and what an effect kidney failure and dialysis have on our life and like others I don't really care anymore. They think that because hubby looks well and can do most of the things that he always did that everything is fine. They don't realize that a machine is keeping him alive and how delicate ( not sure if that's the right word) his life really is.
I sometimes say I would like for them to have to live our life just for a month but then I say no because I wouldn't wish this on anybody. I am very thankful for dialysis but most times the lifestyle does suck!!! And we have it good compared to others because hubby is doing really well.
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It is funny reading all of these posts and having had many of the exact same conversations with ppl in my life.
But I have to admit to an "ah ha" moment the other day when I realized that my waist is getting bigger but I seem to be losing weight. There I was in my own bathroom looking in the mirror and thinking "wow am I getting fat already!"
I had once told my mom not to get so upset about her waist getting so much bigger, and in a humorous way, not to be so vain, that she was ill not fat..... :oops;
All I could think of was somewhere my mother is sitting there watching me and saying " i told you, you silly bi&^# that I felt fat" :rofl;
It was like a window had opened in my head and I can suddenly understand all of the little the little comments that she used to make, and now I just want to find a way to open that same window for my family. But I guess that you really do have to walk in a persons shoes to really understand how they feel.....
I have tried to have more understanding for ppl since that day.
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My family is one of the few who understands, as my kidney disease is inherited. What I wish they wouldn't do is FEEL GUILTY that I got it!
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VV, know the feeling. My Mum feels responsible and my kidney disease is inherited from my Dad! Mum often says if Dad had been diagnosed earlier they wouldn't have had any more children - in other words, I wouldn't be here! :) I have had, and am still having, a charmed life, so am glad Dad wasn't diagnosed earlier! However, there are six girls in my family and only the two youngest have inherited PKD, so perhaps Mum's thinking was right on track.
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That all brings to mind Phillip Larkin's poem This Be The Verse
http://www.artofeurope.com/larkin/lar2.htm (http://www.artofeurope.com/larkin/lar2.htm)
I've left this as a link instead of copying the poem since this is a family forum.
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My Husbands Brother, a very Educated Man, came to visit us, last April. He wanted us to come Visit them in May. His Words were " We can go out to Dinner, everynight, We can go Deep Sea Fishing, there is a Party on the Beach, every Night" I pulled Him into the Kitchen and said, " Ron, can't do any of those things, He has Dialysis and other Issues, it's hard for Him sometimes, to get from Room to Room " My Brother-In- Law, looked at Me and Said, " You know what the Problem is here, YOU, don't want to have any Fun", they left and He has not Talked to my Husband since. Seven Months Ago. Sad. If it was My Sibling, I would be on this Site, learning all I could. Sad.
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DEAR MIZAR: That is a sad story, alright. Maybe you could send him the link to this discussion? LOVE, VERA
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My Husbands Brother, a very Educated Man, came to visit us, last April. He wanted us to come Visit them in May. His Words were " We can go out to Dinner, everynight, We can go Deep Sea Fishing, there is a Party on the Beach, every Night" I pulled Him into the Kitchen and said, " Ron, can't do any of those things, He has Dialysis and other Issues, it's hard for Him sometimes, to get from Room to Room " My Brother-In- Law, looked at Me and Said, " You know what the Problem is here, YOU, don't want to have any Fun", they left and He has not Talked to my Husband since. Seven Months Ago. Sad. If it was My Sibling, I would be on this Site, learning all I could. Sad.
And who could have known 2 months later your hubby would be gone? :cuddle; His brother missed out on "fun" just being together.
Families can be a great source of support, or a real pain in the A$$.
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My Husbands Brother, a very Educated Man, came to visit us, last April. He wanted us to come Visit them in May. His Words were " We can go out to Dinner, everynight, We can go Deep Sea Fishing, there is a Party on the Beach, every Night" I pulled Him into the Kitchen and said, " Ron, can't do any of those things, He has Dialysis and other Issues, it's hard for Him sometimes, to get from Room to Room " My Brother-In- Law, looked at Me and Said, " You know what the Problem is here, YOU, don't want to have any Fun", they left and He has not Talked to my Husband since. Seven Months Ago. Sad. If it was My Sibling, I would be on this Site, learning all I could. Sad.
And who could have known 2 months later your hubby would be gone? :cuddle; His brother missed out on "fun" just being together.
Families can be a great source of support, or a real pain in the A$$.
Just thinking the same thing Okarol...Mizar thinking about you and hope you are finding comfort with your hub's passing....
xo,
R
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We need the same marketing team that the breast cancer people have. Breast cancer stuff is everywhere.
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I have read all of the posts in this thread, I can agree with all of you. My family is understands most of my needs, I help my son in his welding shop must every day when I get tired I just set down till I can go some more. If I have a bad day I just stay home, he understands and we just do the next day what we were going to do that day. in the last couple of months before the company eliminated my job and I was forced to into retirement/disability my coworkers would ask me "What are you going to do" i would say to them that "I was going to live Happily Ever After" and I am!!! CKD has it's up's and downs as you all know but with God's help and a lot of perseverance!!! I am doing OK. When people ask me hoe I feel I tell them that "I'm in Pretty good condition for the condition that I'm in". Best I can say is ride the bull when you can and when you can't set in the stands and cheer the guy that can.
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Everyone must just understand that ALTHOUGH I look fine - I am NOT. I am still as sick as I was a year ago and I will be sick until I get a transplant and then I will have another set of problems.
I was removed from the church's prayer list and I asked "why" I was told that I look so good they thought I was fine. I replied that I am still very ill and that nothing has changed , in fact I am worse than what I was as the effects of doing Dialysis is taking its toll. (depression, heart problems, joint pains, parathyroid ,guilt, Low blood preassure,low HB, cramps and lots more)
So I just wish that friends and family (as well as people at my church) must realise that this disease is NOT curable and it will not dissapear because I look better. It is a LONGterm disease.
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Heh. Yeah, it's funny. I lost about 25 lbs over the past couple of months - and I wasn't trying to lose it. I've just been sick - yet people are always saying "Wow! You look great!"
and I want to reply "I'm dying!"
Sigh. Glad I was fat before I got sick. Fat people just get skinny. Skinny people just up and die.
~Steve
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i've got a friend that i see every now and again. he asks "besides the kidney thing, how're doing" he gets it, most people don't.
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i have people tell me all the time, "you look great!" like dialysis agrees with me or something...stupid
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With you on fat people just get skinny, Steve: I'm thin &people think I'm fit. A bit in reserve is a good thing when your health is on a fine balance.
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I agree with the posts in this thread - the tiredness is something I really wish they understood - so that when my brother's children have UTTERLY overwhelmed me and i retreat to bed after lunch, I am not being unfriendly, unloving or rejecting - I am just absolutely exhausted.
But very most of all, I wish when people say "how are you" they don't only want to know about the state of my kidney, and my urinary rate, but actually want to know about ME - if only they understood that I am bigger than a kidney, and while much of my life might be structured around whether I pee or not, but that does not mean it is ALL I am....!
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Have reread this thread - it is so full of how life is with ESRD. And loved the products with the 'Duck Fialysis' logo - very clever! I've just had a few health dramas and everyone keeps telling me how good I look. That's only because two weeks ago I looked awful! :rofl;
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Being one of the (seemingly) few who functions well on dialysis, I don't have a problem with people saying that I look well. Thats because I am.
I'm not sick, I just happen to have kidneys that don't work, but it's a minor inconvenience in the broad scheme of things.
Henry it is not that it totally ticks me off that people say, "oh you look great!" what makes me upset it that when people say that they are really thinking in their mind something along the following lines....
1. "hey dialysis must not be that bad look how great she looks." (We all know dialysis sucks and you have your good days and bad days)
2. "she/he must not have an urgent need for a kidney if dialysis is doing such a great job. (who doesn't want a chance to get off the machine?)
3. "Well they don't look that sick they need to work" (some days you feel like you can work, some days you can't)
People equate looking good with being healthy....I am of the mind set that people need to know how serious and life consuming not having kidneys are...it's not a walk in the park....dialysis ain't for sissys!
I am glad that you have a more uplifiting positive outlook on not having kidneys...maybe I will get their eventually....
xo,
R
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That having kidney disease and being on dialysis doesn't necessarily mean its an old people's disease! I'm under 40 and everybody says, "Oh, you're so young to have that" It can strike anyone at any age! :rant;
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I agree - dialysis, especially haemodialysis, is not for sissies! And Henry, I often say if you have to have an organ fail - make it a kidney. I'd stay on PD forever if I could.
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As a caregiver, I feel as though I need to know all the in and outs of dialysis and transplant, but it's always changing. I wish our family and friends understood that this is a lifetime illness, it affects all parts of your life, that it isn't going away, but we do the best we can.
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I wish my family understood that I have no idea when I will receive a transplant. Since none of them (and there are a lot of them!) have taken the time to even inquire about being tested, I am waiting for a cadaver donor. No matter how many times I explain how the cadaver donor list works, they just can't seem to get it through their heads that it's not first come, first served.
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As far as day to day life is concerned, dietary restrictions. I wasn't being "picky" when I didn't eat the mashed potatoes at Thanksgiving or the pumpkin pie. Turkey, stuffing and cranberry sauce (with a little homemade gravy) were just fine, thank you. I know you worked hard cooking the other things, but they weren't on my "OK" list. So I didn't eat them. Including the home baked whole wheat bread or whatever brownish bread it was.
Because I don't look sick, they don't think I'm sick. Hey, I don't feel sick now, either, that I've adapted to hemodialysis. But I am, and always will be, sick. At least until I get a kidney transplant.
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it sure is frustrating, even more so when you tell them many times over that you cant eat that, but they make it anyway and you dont have any other option but to eat it. and then they wonder why you dont feel well.....
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I've given up being tactful, or even nice in some cases, when people ask me how I'm doing, or when I'm getting a kidney... the only people I won't give the gory details to are my grandparents, since they are in their 80s and I don't want to upset them.. I have no problem now telling people that I get stuck with needles the size of drinking straws (ok, they're not that big, but they're pretty damn close), or showing them the black, swollen lump on my arm where the nurse missed the vein.. I want them to know that what I do to continue living is no walk in the park
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Not so much my "family" but my "family" at work. On Dialysis days, I start my day in the office at 5:30 AM. Which means, I'm up at 4:30 AM, getting ready and driving to work. On normal days, I start @ 7:00 AM.
I work a full 8 hour shift including a 1/2 hour lunch, and then go to my in-center treatment @ 2:45 PM. I do feel guilty about leaving, to go to my treatments when my co-workers are still working, but then again, I came in to work, while they were still under the blankets.
But I constantly hear, every M . . W . . F. . "there he goes, working a 1/2 day again. This must be his 2nd or 3rd 1/2 day this week".... I am so sick and tired of hearing this.
I put in (and my boss knows it, so I'm good), but, I put in 70+ hours Monday - Friday and then come in on the weekends, or take work home with me nightly and on the weekends.
I am the first one to be able to take a joke, or be the butt end of a joke. I don't mind it at all. Lord know's that I can "dish it out", so I surely had better be able to take it, too! And I can, I've got big shoulders. But it REALLY bugs the HELL out of me to hear that. >:D
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I'd look at anyone who said that and ask if they wanted to trade..
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One of my neighbors is a bit annoying. I ignore it since I can't :Kit n Stik;
I have a landscape company taking care of my yard and landscaped areas now. She's made a couple of snide comments about it.
She also keeps trying to push plants off on me. She decided I should dig my daylilies out and replace them with the variety she has, and she keeps trying to give me other perenials from her garden. I'm not planting anything until after I get a transplant and get some energy back, and even then I'm going to choose my own plants.
She has some sort of weird pod thing growing in her yard and she laughed at me when I refused to eat it.
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I have a landscape company taking care of my yard and landscaped areas now. She's made a couple of snide comments about it.
There is a couple who live two doors down from us. I've seen him very occasionally (I don't even know his name), but I've never seen her. They have a landscape company come take care of their yard, and they also have Peapod service delivering groceries. It wouldn't even occur to me to make snide comments as I would give anything to have so much practical help! I can't help but wonder if she is quite ill, but all the evidence points to a pretty big problem. I'm sorry, Deanne, that you have to deal with such an idiotic neighbor.
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I wish people at work would realize after working with 6th graders all day I am usually dog tired and apt to be snappy at a meeting when we do not get on with it!!!
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I wish my family really understood what being on dialysis is like! My son in law is a nephrologist, so my daughter should have a clue. She thinks I am being selfish when I come to visit her and need to leave by 5:00 so that I don;t have to drive 3-1/2 hrs to get home in the dark, and can still connect to my PD machine at a decent hour. I can understand that with 4 kids ages 6 months to 7 it is easier for me to go there than her to visit me....okay, venting over...I just know that I raised her better than this!