I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Des on October 15, 2010, 04:44:23 AM
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I haven't been on for a while. Work has blocked the site.... but the second reason being ... I am still VERY negative and I thought it better not to say anything unless it is positive. I cannot give any support to anyone right now. I am really having a bad time getting used to this. I really cannot see myself doing this for the longterm and I spend most of the time at dialysis either crying or complaining about everything.
I just wanted to let you all know that I read what's going on with all of you. I am very sad that I missed deaths, transplants and other interesting things in everyones lives.
A few of you will remember that last year Nov I had a possible donor - well we are trying again. I'm not even looking forward to a transplant. It took me 9 months to recover after the op in Jan, physically and got some of my work back and now I have to start all over again. We are going for some of her tests on the 27th Oct. What will be will be.
:'(
I am just so ........ I don't really know......I just hate this darn disease SO MUCH! It is really stuffing up my life.
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:cuddle; It is hard to be positive.....
When I start feeling down Dear hubbie starts to sing Monty Python's "always look on the bright side of life" and I say "she's not dead yet" in an awful english accent.... and we laugh....
do you now Monty Python???
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Yep, we have BBC and I have seen some of it on telly. I have a fab hubby and 3 wonderful teenagers.... It still doesn't help me accept going to dialysis.
Thanks for trying.... :flower;
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Hey whats awful about an english accent ? :rofl;
Hi Des i wondered where you had gone , but maybe thought you wanted a bit of peace. I not suprised you feel like you do , after all this time im still negative and doubt i will ever change ! Sounds like a bout of depression creeping in, they take over me once in a while as well. How are you actually feeling physically ? Do you feel a little less 'foggy' ? If you do feel a bit better , then thats something to focus on isnt it. Use your time at dialysis to do something you wouldnt have time for , reading that book you never got round to, watching that dvd or using the internet? Anything you can do to improve your work load ? You've got to cling to the positives to outweigh the negatives. :cuddle; KS x
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I know how hard it is Des. I've been doing this for 13 yrs. It's not fun but I don't really have much hope for transplant, at least not without doing a lot of intervention before hand. And even then, I don't know how long it'll last. The last one worked very well for 15 yrs. I just try to do everything regular people do. I find exercising to be the best mood elevator and, right now, I am recovering from a broken back and miss working out. I go for a CT on Monday and hopefully it'll tell me how well I"m healing. I LOVE life and my hubby, cat, dog and horse make it all the better. I have good friends though they really don't understand my health. In fact, my health is so good that most people assume everyone with kidney failure is just like me and the days when I'm not well they figure can't be all that bad. If they only knew what we go through!! But I think my biggest way of coping with my disease is staying away from other kidney patients. When I was on PD I'd go to clinic where NOBODY looked very healthy and it made me feel like a sick person. It's really a big psychological game and I'm becoming a master!! You, too, can master it but it takes mental stimulation of the right kind. And most important....we're here for support, and we all need a little support sometimes!!
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Kickstart..... nothing at all is awful about a real accent..... it's my awful new jersey version that is awful :rofl;
Des.... I understand, I have not accepted it either.... just trying to master the Psychological game Carson speaks of....
:cuddle; I find myself getting scared at night lately... I just started the dialysis portion of the CKD Journey...
Carson.... the psychological game is hard ...... :stressed;
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my accent is boring, but then again the other day a young American lass told me she could melt listening to me read the phone book... flattery!! :rofl;
Des hun you SHOULD come here to be negative - you DO NOT have to support anyone else!! This site is to GET support when you're feeling horrid about things, and vent in a community who understand at least some of the issues you have to deal with.
I don't know if I'm "used" to dialysis. I'm not certain anyone ever does (or even should for that matter). As we all know it's a fact of life - indeed it IS life.. but that doesn't mean it is the be all and end all. Like I like to say a lot "I don't life for dialysis, I do dialysis to LIVE!" - and I focus less on D, and all that and focus on the other things in my life - my work (yeah, even work is a positive compared to D! :rofl;), spending time with workmates and friends, interacting with folks on IHD, facebook, exercising, keeping up on news and hobbies and stuff....
I know it's NOT easy!!! ANyone who thinks or suggests that is either a fool, a liar or one of those stupidly positive people that you just want to punch in the head. :rofl;
I think you should try and focus on things like that, and I think you should remember that dialysis keeps you with your wonderful hubby and teenagers - and all your other family and friends... and that's why you do dialysis.
During my sessions if I feel crappy I try and distract myself by chatting with the nurses, making a joke or something. I know that sounds silly but well.. it usually works for me. The thing is at D I usually am watching stuff on my laptop or chatting to the ladies, and I actually don't think that much about D. Sure, I want to get out of the uncomfy chair, but I focus on watching the tv show I'm watching or whatever, and soon enough it's time to go home and feed my kitty.....
Hang in there Des.... I am sure things will improve for you shortly!
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Richard ..you have a great way with words!!
Wish I could hear your accent!! :2thumbsup;
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Thanks KS and friends.
I am just so tired of complaining and moaning about the disease that I have stopped talking about it to everybody around me and to IHD. Hubby catches me crying sometimes and he says the right things....
If this is depression, then it just gives me even more reason to hate this disease...... I don't want to go down that route at all.
I have tried to knit, read and watch TV but you can only do it for so long.
I have lost all my friends, they are too busy for me and my disease. I am really isolated from all except hubby and work. That is no life. Work and dialysis.
I tried going to gym on Tuesdays and Thursdays but I stopped because the kids need me to assist them with homework, projects and just to talk to. I feel guilty for not being there Mo. We. and Fr. already.
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I don't really see the point in complaining about my lot in life. I mean it's what it is. Can't do much about it - all I can do (eg: diet, exercise, fluids) I am doing.
Maybe you are suffering from depression - have you considered seeing a professional about this stuff to get some help (antidepressants or otherwise)? Remember a lot of the things you're feeling are perfectly normal (we've all had them - even me for all my positive talk). The thing is to try and not let that stuff rule your life.. and it sounds like right now it is - and that's not healthy for you or those around you.
I know it's not easy and please don't think that I'm trying to make out that it is, or what you are going through isn't valid or anything like that - absolutely it is. I just wish I could help you somehow.
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Hi Des. I'm so glad you posted because your words are honest. Richard is right in that the purpose of IHD is to get support as well as to give it. This site is called "I HATE Dialysis" for a reason.
I personally think that complaining can do a world of good if done in the right way. This is where you are right now in your "journey"...the distaste and nastiness of CKD, the fury, the grief the resentment of loss. Other people can do the happy clappy stuff because perhaps they have progressed to the happy clappy part of the journey. But you are so right...sometimes we get into this circle of moaning/venting (like bursting a boil), and then we get bored with moaning, things are a bit better for a while, but the boil slowly refills and the need to vent returns.
Sometimes emotional upheavals can be dealt with in practical ways. I remember how much you resent missing time with your kids. You've mentioned other areas in which you've suffered loss. My first suggestion is to sit down and imagine dialysis being a job. Dialysis is a period of time that is blocked out for the work for keeping your body healthy. Anyone who works knows that what time is left over has to be doled out carefully because that free time is precious. It is common for friends to fall away when you've taken up a new job that focusses your attention elsewhere. Everyone has busy lives these days, and everyone has to schedule their time effectively. If there is a "lost" friend that you want to reconnect with, schedule that. Would it be possible to have a friend or two around to your house so that you don't have to miss any time with your kids?
IMHO, you need to let go of the guilt. That's a burden that you are putting on yourself. I suspect that your kids are not telling you that you are an awful mom because you have to go to dialysis. ESRD is hard enough without you piling on the guilt, making things even harder. Your kids are not going to be found dead by the roadside just because you've been to dialysis. So please, start by ridding yourself of this. :cuddle;
Look, I'm not even on D yet, but I feel everything you're feeling. Mostly anger and resentment that this thing will always be a part of my life. Oh God..the nights I've spend sobbing and yelling at the unfairness of it all. I'm still struggling to come to terms with CKD, and I was diagnosed 20 years ago!! But I will tell you one thing that does help me, and that is exercise. Des, if at all possible, please go back to the gym or do something physical. Can you take a 30 minute evening walk with your kids and husband? You get some fresh air and exercise and also some time with them.
Keep pursuing transplant options. There's real hope down that path. The fact that you have a possible donor should give you hope; a lot of us here on IHD have no one who is willing to step up for us. I know I don't.
What has happened to you is unfair, but you have a reason to live. You have those kids that you love so much. There is a purpose, a reason to keep putting one foot in front of the other.
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Hello, It is interesting....when I read your post, I was like, I feel the same way. I sit there at D and look around at all the people at my center. Several of them don't have legs, a couple of them are taken out by ambulance often, some come in on a stretcher and some are in wheelchairs. I'm the youngest one there and I just say, This is not my life. I don't see this as being real. But, I know for now it is.
I had a kidney/pancreas transplant in Feb of 09 and it failed after 5 days. I didn't even get to go home from the hospital. So, I'm not real excited to get another one. My annual testing is on Nov 4 and in a way, I'm like, do I really want to do that again? But, I know I will. It is hard. I do try and think positive. Right now, I can't seem to exercise at all. It is all I can do to get through my days. I honestly do try and make myself be positive. I figured Fake it till you Make it. I fake being happy and healthy and act like I have tons of energy. Then, when I go home from work, I poop out. Take a nap or just veg out. But, by george at work, they think I am doing great. They all know what is going on, but I do try and seem you know, up beat.
I hope you can do that to. Just try to fake yourself into being a positive role model for your teenagers. I have one too. That is so important as I think it teaches them how to handle things that will maybe come their way as they get older. With a positive outlook, smiles and an Everything will be ok attitude.
Hang in there. I am!! :cuddle;
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I've been thinking about this discussion all day, and a couple of things occurred to me. This is certainly not gospel, and if what I post is entirely irrelevant to you, that's all well and good. I've been thinking about the whole idea of "faking it". I think this strategy can work for a lot of people some of the time, and I can see where there is a certain generosity of spirit that goes with wanting to protect the people you love from your dark thoughts. It's true that there are times when a modicum of happiness comes from pretending to be happy. But I don't think this works for everyone all the time, and I have found from my own experience that faking it all the time creates distance, mistrust, misunderstanding and a lack of intimacy with those you love. It can also put a terrible burden on you just when you don't need further strife.
Faking it all the time is fundamentally dishonest and doesn't do anything to prepare your kids for life's hard times. They may grow up to think that feeling sad or frightened is weakness and is unacceptable. And they may grow up to feel that they should not share these feelings with their loved ones. Not feeling like you can share these feelings leads to isolation just when you need support the most.
I don't know if faking it makes you a positive role model. Other people are made more comfortable when you fake it because it is easier on THEM; it doesn't scare them when you pretend that your life is wonderful all the time. I think you can teach your kids that fear and anger are normal human responses, that it is OK to share those feelings with people you love and trust, but that this fear and anger doesn't stop you from doing what you have to do.
When you reveal your fears and disappointments to your loved ones, it shows that you trust them. That creates intimacy, closeness. And that closeness battles isolation, and THAT can lead to gaining the strength you will need to fight your battles.
Fake it when you feel it benefits you, but trust your family with the honesty of your feelings. :cuddle; :cuddle; I say this to you because I know what it is like to lose the closeness with someone as a result of faking it and hiding what you are really feeling. I swear I'm not just making this stuff up.
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Hi MooseMom, I appreciate your insight on this subject. I enjoy reading all your posts and look up to you tremendously. In my case, this works best with me and my situation. I do have a handful of people that I let it all hang out with, but at work, in my situation, I believe they need to see strong, positive, with it people. So, I do try to constantly be as positive and strong as I can. With my daughter, well, she has had enough on her plate. She has seen me break down a few times in front of her. So, she has seen her Mom be angry and mad and sad at the situation at hand. But, in general, I do try not to do that in front of her.
Thank you again for your input.
:cuddle;
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Tracy, I know exactly what you are saying, and I agree with you wholeheartedly. How we behave and what we choose to reveal to family members is very different from what we show to people at work, and even that may be different to what we do around complete strangers. We are always monitoring situations and modifing our actions accordingly. What you say to us on IHD is very different to what you say to people at work, and each of us has to decide which strategies work for us at which times. Often it is a subconscious thing.
If we didn't at least TRY to stay as positive as we can, then we would falter. I guess what I am saying is that trying is hard and that sometimes it is impossible to be positive, and that's OK. I'm sure you have brought up your daughter to know that life is sometimes difficult. And I'm sure your daughter, seeing your anguish, has learned to have a gentle and caring heart. Being positive teaches one set of lessons, but I do believe that allowing your daughter to see your feelings teaches her empathy and strength and compassion and trust. I am glad that you have discovered what works for you at work and what works for you at home. That's often half the battle! Moreover, I know your words will be a big help to Des who is really struggling right now. I hope she will find some strength in your encouragement. :clap;
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I dont agree with the 'fake it' idea either ..tbh ..why the hell should we ? I dont know of anyone else with a serious illness that fakes it . To me that goes along the lines of being ashamed of being ill so feeling the need to hide it. Ok so people dont want to know all the details but i certainly aint faking it for anyone . I have kidney failure accept me as i am , good days /bad days or dont accept me at all.
Des i dont know when it will happen but one day it will , you like me will probably never be at peace with dialysis , but you kind of learn to tolerate it. Im always , even after all these years going to be one of those angry people, angry at how my life has changed. I cant be the :angel; about it all . As long as you master each day , find one thing that day that makes you smile , you will get through it.
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I'm one of those people who fake it. I don't want the people around me, especially my mom, to know some of the dark things that go through my head. I don't want to be treated differently than anyone else, and I'm already treated differently because of my eyesight. I don't want it to get any worse. So, I pretend everything is fine, and keep what goes through my head, which is mostly paranoia, to myself.
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after rereading this thread, I have to agree with Riki. I hate being around sick people. I don't want to be treated differently. I live my life as though I'm perfectly normal aside from the line sticking out of my chest (my chesticles) and I hook up to a machine like the guys in Universal Soldier. I don't need the whole world knowing my business - that's why I come here. You are the ONLY ones who truly understand. Everyone else is "meh". They can't appreciate it like I couldn't appreciate my mom's cancer, or my brother's mental illness. So, yes, I'm a faker. And that's what gets me through almost 30 yrs of this sh*t!
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Hi Des. I have missed you so much. Please keep us posted: good or bad. :grouphug;
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It is so interesting to read how different people present themselves to the "outside world." I don't think I've ever been treated differently because I have CKD. Perhaps I am past the age of really caring all that much about how others see me. I don't think anyone really gives me that much regard or thought; I'm sort of an "under the radar" kind of person. I don't believe that most people who know I am ill really think about it all that much; they have their own lives to lead. When I am with other people outside of my family, my illness is largely irrelevant. But I don't "fake it" around people who care about me because that takes energy that I don't have. If I am having a bad day, I'll say so.
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Jenna used to say that dialysis was like waiting for a bus. You're stuck, can't go anywhere, the scenery is boring and you wait until it's your time to get moving again. Her way of dealing with it was by not dealing with it. I think the low dose of Celexa the doctor prescribed took the edge off, and it probably helped her through the first year and a half, when she decided to stop taking it.
I am happy to see you post Des. This is what IHD is all about - the truth. I admire you for sharing and facing the reality of what you're going through. I wish it were better. Can you adapt? Will a transplant be the answer? Can you cope with all that is required? Know one really knows. But if you can get through today, not worry about tomorrow or yearn for yesterday, just for today do your best. And tomorrow, start again. I know some people say that "one day at a time" is a bit of a cliche, but it has helped me through my darkest fears.
We love you. Wish I could give you a hug. :cuddle;
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Earlier I started a reply here, but reading through the thread reminded me of all the things I hate about dialysis and my life (a lot of the things we all hate), and I just wasn't able to get my thoughts together in that state of mind. Now I'll try again.
I'm much more comfortable writing online than I am in face-to-face interaction, so I tend to hide any problems I'm having when I'm around people, then get home and let out all my complaints to friends online. :rofl; On the other hand, I feel bad when the only things I talk to my friends about are how bad I feel or how frustrated I am with life, and then I end up silent.
I have lost all my friends, they are too busy for me and my disease. I am really isolated from all except hubby and work. That is no life. Work and dialysis.
I know exactly what you mean. My only remaining friends are the ones I talk to online and can't see very enough thanks to distance. Dialysis, and the inability for me to work and so the lack of money, make it really hard to visit my best friends more than a couple times a year. I don't have a SO; I'm living with some of my family, and they're not fun to hang around with.
"That is no life." I keep thinking, "this is not my life. My life will start back up again once I get a transplant." Yet I still don't do anything about it. So I get what you're saying.
Faking it all the time is fundamentally dishonest and doesn't do anything to prepare your kids for life's hard times. They may grow up to think that feeling sad or frightened is weakness and is unacceptable. And they may grow up to feel that they should not share these feelings with their loved ones. Not feeling like you can share these feelings leads to isolation just when you need support the most.
Ideally, I wouldn't ever fake it. If it makes it harder on me to fake it, and I have to fake it for you to put up with me... it just seems to make more sense not to fake it and only deal with the people who can deal with me as I am. But that would require not caring how many people (unfairly) don't like me, and I'm not to that point yet.
Oh man, I made this all about me again. :embarassed: There are other things I wanted to reply to, but I'll save it for later.
Des, I want to say it gets better, or you get used to it, but I haven't yet - the sadness and frustration just affects me differently. :cuddle;
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I recently had a niece tells me she had 'forgotten' I was ill. I'm glad that she could forget - I'm glad that her every thought of me is not about my illness. On good days I even forget myself sometimes.
It's sad to read about peoples struggles but reassuring too, because I guess we all have bad times. As Karol says, one day at a time.
I try to count my blessings and am keeping a 'glad book'. Hopefully my grandies will read read one day, so they'll now more about me than just that I had kidney disease.
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A lot of good comment and thought in this thread since I was last here. See Des, you may be down about stuff, but you've created something positive right here with your sharing!! ANd hopefully, just a little bit, you sharing where you are at can help you just a little bit.
Anyway I was thinking about this thread, and Des in particular, when I was in the chair on that infernal machine today. I started thinking about how I deal with it and manage to get through most sessions in good humour - and why it is that while I hate dialysis, I actually really love my unit and going there is, in some ways, not the chore it once was.
I suppose these comments won't provide any help or comfort, but I thought I'd share some of the thoughts I was having, because it was in my mind - specially when I saw a relatively new patient shed a tear being very frustrated with things.
I think there are a number of aspects to me. As I've written previously I personally believe in trying to approach things in a positive way - I mean curling up in a ball and crying at the world won't help me any and just get me upset, down (and up my blood pressure). In a way I feel my own eyesight problems (Hi Riki :) ) have helped with that - because I was born with bad eyesight, and that caused me a lot of issues as a kid - not being able to play sports I wanted, never getting a date, not being able to drive etc etc... so I guess I already went through that whole "why me?" stuff. These days I value what I *can* do then what I *can't* - and appreciate that while my eyesight is not great I can still see enough to enjoy many beautiful things in life - like watching the waves crash on the shore, a beautiful sunrise or sunset and of course the curves of a beautiful lady >:D - in the same way I guess I see dialysis as just another one of these things that I've got to deal with. I can't change it. So, I try to not focus on that but what I can do... and hey dialysis lets me continue to appreciate what IS out there and that I can enjoy (yes, that includes those curves.... well I try anyway!)
Another aspect that helps me is a real sense of community at our unit. Much like IHD, our dialysis unit is very much a community. It's not the nurses and us. It's not me and some other guys in chairs. There's the group of regulars. And the staff are more our friends sometimes. It's funny one of the nurses came to me today and said that she felt for me when there was that transplant last week (quick recap: The guy in front of me got the call while on D last week, then it turned out he and I are same blood group but he'd only had to wait 3 years for his transplant call) and she talked about how she and the others all were so much hoping it was mine. And it wasn't said in a way that they want to get rid of me, it was because they care. In fact she said "Oh this place will go OFF when you get a transplant!" it was so sweet. I just felt so very valued and thought of in terms other than patient X in chair 2. That's what I mean about community. It's not just the staff though - we all care about each other - even the crazy old Greek guys I see and their wives/families. Like I said.. community. That is very important to foster a better feeling about going to D!! I mean I am happy to see the staff and chat to them... suddenly it's not about the needles and the blood, it's about catching up with the guys.
Des do you ever have any kind of sense of that sort of community at your unit?
About the "faking it" - I've always been an open and upfront kind of person - ask me something and I'll tell you - but obviously you need to be tactful and appropriate. I mean as someone else said, at work and amongst people you aren't close to it's often better to just say "yeah I'm fine" and leave it at that, but at the same time, I have always been open with those around me that I spend a lot of time with, like at work - my co-workers, boss etc... it's kind of two fold. If they know what's going on I think they'll be more understanding if something comes up and I just can't do it for whatever reason. I guess I see it as treating people fairly. For example, I went into my job knowing dialysis was in my future (this was 7 years ago, and I had not yet started). Now I didn't go into detail in my job interview or anything, but when I was hired I sat down with my boss and explained that this was in my future, I didn't know when etc, and that it would impact me a few days a week. Why did I do that? Not for sympathy or to get extra help or anything but simply so they had a heads up. Imagine I didn't say anything, then some time down the track I had to start (maybe without much warning) and then tell them "oh by the way this is the way it will be now, and I've known this for awhile" - I just didn't think it was fair to give someone a "nasty surprise" like that. Now, since te guys know what the deal with it's just routine. I leave work Tuesdays and thursdays to go to D, they don't schedule meetings I need to be at at those times, and everything works out pretty well. They know if they call me with some problem when I'm at the unit I can't login to the systems till later to look at it. Yes, I am lucky to have very understanding co-workers and bosses (they are all about 'get that bloody transplant!') - and again it's a sense of community. Now sure I don't share everything that goes on, or when I feel rreally bad - just the general stuff.. or maybe I share a funny story or something. It's part of my life but it's not what drives me.
With family and close friends... the ones that MATTER.... I am not going to hold back that much, but by the same token they also know the stuff I wrestle with, so I don't feel the need to repeat ad nauseum that stuff. I suppose because I try not to spend much time or effort wringing my hands at my lot in life there's not a lot to share in that dept. My family often say that I'm very "stoic" in my approach and just deal with it like anything else.
As for friends, and losing them.. yep, been there, done that (followers of me on facebook will know this). I suppose what I've learned really is that when you lose a "friend" they're clearly not the right sort of friend - and may never have been one in the first place. It's amazing that it's times like these that your REAL and true friends are. Those that stick by you and are always there. I only have a couple, but they're worth it. The rest can go to hell.. if they don't want to deal well... whatever.
Finally, and anyone who's ever read anything I've ever posted on here, one real thing I find that helps is humour! (or take out the u if you're American :) ). I guess I also tend to follow the adage that "If I can't laugh at it I'd cry" (and, of course, that laughter is good for the soul). So I'm often making jokes -often at myself - or making light of things. Not because life isn't serious (hell anyone on dialysis knows that!) but well sometimes it's just so tough that I probably would burst into tears if I couldn't laugh. I find humour works A LOT. Our unit nurses recognise this too, and often use it. It really helps relieve things sometimes. Today for example the nurses were deciding what type of coffee to order, so chief nurse says her usual "skinny flat white extra hot" so I piped up with my usual joke "yeah, just like me!!" - so she said "yeah, I'll just go down and order a Richard then!" :rofl;
Look I know this is all so hard. We are all there. We understand, and we're here for you! :grouphug; :grouphug;
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I haven't been on for a while. Work has blocked the site.... but the second reason being ... I am still VERY negative and I thought it better not to say anything unless it is positive. I cannot give any support to anyone right now. I am really having a bad time getting used to this. I really cannot see myself doing this for the longterm and I spend most of the time at dialysis either crying or complaining about everything.
Good! That's exactly what I do too. Why keep all that heartache bottled up inside you? Let it out, let the staff know how you feel. What are they going to do, quit? They're PAID to listen to you. You're a paying customer. And the customer is always right. Unless you get violent or threaten to, they can't throw you out--so make the most of it!
I hate dialysis too (notice the name of this forum isn't "I LOVE Dialysis"). I've been doing dialysis now for two full years--and I hate it just as much as the day I started.
And just tonite, the nurse infiltrated me. I didn't smile or "keep a stiff upper lip." I made it clear that I was not a happy camper. That's better than my coming home upset.
Remember: You don't work for them. They work for you.
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Richard, you are always so WISE - does dialysis make you wise? I'm looking forward to becoming wise if that's the case!
Grin and bear it seems to be the basis of everyone's advice - hard to do on those bad days but easier to do with IHD :clap;
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It was so cool to read all the posts.
I think if I had a nicer unit it would not feel like a sheep going to slaughter. They are underpaid and work very long hours - so they are miserable. The people in my unit are mostly black - so the rasism and cultural barrier is very big. We have nothing in common except dialysis. They speak another language with the staff which I don't understand. (the staff is also african) So I am really left out. I spoke to a few other white english patients but they say I am a "stirrer" so they ensure that we are not sitting close enough to talk. So I am isolated. We cannot bring laptops - the unit has no plugs for us to plug our laptops in. I have 4 "black"" language tv channels to watch. I will never ever sleep as I do not trust the staff.. to watch the machines.
I will try to stay positive. Thanks for the good advise all.
Will add later... have to go to a meeting. :stressed;
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Richard, you are always so WISE - does dialysis make you wise? I'm looking forward to becoming wise if that's the case!
Grin and bear it seems to be the basis of everyone's advice - hard to do on those bad days but easier to do with IHD :clap;
Me wise???? :rofl; :rofl; :rofl; :rofl; Well my high school's motto is "Dare to be Wise" - but it's been a long time since I wore the school tie (thank God!) :)
I personally blame those pesky toxins for the nonsnse I type. You might notice it gets worse (and more verbose) on dialysis "weekends" :rofl; :rofl;
Des - wow, it sounds really difficult for you unit wise - I can't imagine that kind of situation, specially because I imagine there are all kinds of racial undercurrents there that are probably very unique to South Africa, and it's history - specially in recent times. I really don't know what to suggest as you are really much more limited in your options to interact with others or even entertain yourself.....
I imagine I would be pretty down about it if my unit was like that. Yet here I am packing away a box of choccies for the lady who makes us tea and cleans the chairs (it's her birthday).
Does your unit have a social worker or someone you feel you could talk to in regards to your situation there - even maybe to try and improve entertainment options or provide power for devices like DVD players or laptops?
I am definitely not wise enough to know what to do :(
:grouphug; :grouphug; :grouphug; :grouphug;
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Oh, Des, this makes me so sad for you. :(
No wonder you struggle so much with dialysis, no one should get used to discrimination.
Can you not request that they provide at least one channel in Afrikaans, being it is an official language of the country and my understanding is if you need a public service, they are required to provide those services in any of the 11 official languages of South Africa? (I believe that for some services, it is only 6 languages, but Afrikaans would be on either list.) I suspect you do not feel like making a big scene over this, as you've already been unfairly labeled, but I think Richard has a good idea that you should discreetly seek out someone who can advocate for you.
Separating you from others with whom you can speak is cruel and vile.
Keep updating us. I hope there is a solution for you! :grouphug;
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Gosh, it didn't even occur to me that there might be some racial obstacles at your unit, Des. That adds a whole new layer of isolation and general unhappiness to an already frustrating situation. When my mom was alive and was on D, the vast majority of both patients and techs were non-white, and my mom was "the little old white lady" of the unit. There were people from all over the world, but there was never any problem. In fact, my mom would call me and tell me all sorts of stories about the nice people at dialysis. So your situation is so different from anything I've encountered. I'm really baffled.
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Des - :grouphug; :grouphug;
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Des if you've no tv how about a portable dvd player? a nintendo ds ? i spend ages on mine ! Even over here at the main unit (you only end up there if something is not going right )we have more 'coloured staff' than white! and they stand one each side of your chair talking in their language. On my small unit the nurses may as well do the same about one third will actually pass the time of day with you , otherwise they would rather get back to the nurses station and chat amongst themselves . RM's unit sounds unbelieveable (not as in i dont believe him) friendly jokey chatty nurses , little extra's , it must all make a difference. Our unit is ship em in , ship em out, we want to get home.
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No social worker..... I asked.
We are not even allowed to warm up the "bean" bags in the microwave as it is a germ hazard. (It helps with cramps)
For a Fresinius unit this one is very basic. Although it has very fancy dialysis machines.
I really think that I would have adapted more to a friendly, helpfull and social unit.
If you remember clearly - I tried to start a support group, I was given a letter by the unit manager prohibiting me from even attemptiing it as I am not allowed to contact any people in the unit to ask if they want to join. That was the "trouble-making" that they accused me of.
I have written(mailed) to the head office about some basic things the staff do wrong, like they leave the unit unatended and let the alarms blair on... but I only got a "we'll look into it" and that was that.
I am really trying hard ... honestly .. I am but I just don't want to spend any time there..... :( It is like going to the dentist - just worse. Last night they hurt me pretty bad. I cried - again. Those needles are ruthless.
Later :thx;
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Des I really feel for you. :cuddle; Kickstart there are units like Richard's - hubby's was!!! Hubby even missed the social part of going there when he started home hemo. He still goes to visit sometimes (not for a treatment though unless he has too)!! So hard to go somewhere when you don't feel comfortable. I can't believe that you were not even allowed to start a support group, Des. Could you get around it by having a friend set up the group - someone who is not associated with dialysis. I also can't believe that the nurses leave the unit with patients unattended and alarms going of. That is dangerous!!!
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Incredible. Just goes to show what different standards can be like in different countries.
I'm so sorry Des - I wish I knew what to suggest - *I* wouldn't want to be in your unit!!!!
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No wonder you are miserable, Des. I truly am astonished at the complete and total lack of compassionate care in your unit, and yes yes yes yes, I DO think you would be able to cope better if your unit was not the prison cell you describe. It's just wicked. Is there any nurse/tech who seems to be a bit nicer than the others? Could that person be cultivated gradually as an ally? It seems like they've already decided that you are a bad patient, and you might have to work very hard to change that perception...frankly, I don't know if you can.
Des, do you think that race is at the bottom of your problems at the unit? That's an awful question to have to ask, but if that's the reason behind their atrocious treatment of you, maybe we can start from there and begin working on some way to get them to see you as a real person and not as just another body.
This is awful. D is hard enough without added torture.
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Des , at the moment you are very fragile , i was like that when i went to my unit , now well im the 'blacksheep' but an honest one ! I've grown a hide like an elephant and you will know from my posts , i have my up's and down's ... I dont care anymore , i speak my mind , i dont bow to anyone ! The hardest part is sticking it out till you toughen up ! I know it doesnt help you but it might make you laugh ...Today i took on the most grumpy miserable old g**, even the staff dont like to get on the wrong side of him! He has been seen fighting with his walking stick to get in the unit first and heaven help if he is kept waiting! Well today they put him opposite me ..big mistake! I have to have the lights directly above me off as you know ..and yes he wanted them on. So im trying to explain to him why and all the time im talking he's like yeah , yeah , whatever , i dont really care. So i shouted across at him ..look just because you are old doesnt give you the right to be a cantankerous old sod ..well when i looked away all i could see was the staff with their backs to us and their shoulders just going up and down, laughing their heads off. Needless to say in the next 10 mins he was fast asleep anyway ! Now when i first went to that unit i would have been in floods of tears if that had happened , so you hang in there , it WILL get better ! :cuddle;
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Des...... I know I havnt been on here for awhile....... gee I am so sorry..... you are in a world light years from us....yet we all understand..... we just need to convience you ..... stay strong.... I need to gather my thoughts on all of this...... I will Pm you later....
EVeryone here has such great support..... thx to everyone ....
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Oh, Des, no wonder you're so miserable. :cuddle; It sounds as though they've turned your dialysis chair into a small and hostile prison.
Forgive me if I missed this bit of info, but do you have the opportunity and/or the willingness to train for home dialysis? It sounds to me like the bulk of your problem is the unit; if you could remove the unit from the equation it might make you a lot happier.
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KS --- I will :Kit n Stik; from now on... heheheh
In South Africa home Dialysis is not in use yet. The machines are not available here. (Maybe someone somewhere can export some here) :thx;
I am fighting against a lot of things and maybe the rasicm is just my "perception" but all I know is they really don't go out of their way to make things easy for us.
I am really tired today. I can spend the whole day just lying down. (not sleeping though)
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Good for you :cuddle; .
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Des, I went to NxStage's website and filled out their standard inquiries form, and I asked if there were any plans to make their machine available in RSA. I don't know if they will respond, but if they do, I'll let you know what they say.
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I had a strange connection with Nxstage. I went for a mammagram, the tech and I talked about kidney failure. Her brother is in sales with Nxstage. She contacted him, he emailed me. Then he had the local Nxstage office call me! They invited me to the office (about 30 minutes away) and showed me everything, introduced me to patients that were in training, walked me through the whole set up and process. It was so helpful. I would have never known there was an office so close. My local neph was all for Nxstage. He is from Egypt and had bought the system for his uncle there and shipped it to him! He makes sure he gets all he needs for his exchanges. You just never know when someone will come into your life with just the information you are looking for.
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Cheer up, Des...at the very least you have got us and we are all posting in trying to help lighten your load. It's fascinating seeing the different ways that other have responded and the methods they use to cope.
My plan is simple and I know what I have to say will sound self serving and sentimental but I am trying to make my life mean something even though I have CKD. I do the best I can.
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Des, I went to NxStage's website and filled out their standard inquiries form, and I asked if there were any plans to make their machine available in RSA. I don't know if they will respond, but if they do, I'll let you know what they say.
They will make a killing (pardon the pun)
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I haven't had a reply from them, but I will ask again.
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No words of wisdom from me - just this :cuddle;
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Des, I looked at my previous post and it's stupid...I hadn't read your story properly and my effort was full of faux sympathy. I really don't know what I would do in your situation, like Richard says - it's the people you meet at your centre who are sharing your problem that make a difference to your own attitude.
Here at RPA Sydney, 90 per cent of my fellow patients are not of what a person my age would call Australian origin, but we all get along very well. I know it's an impossible dream, but can you try to immigrate to Australia? I had a Fijian gentleman alongside me who did just that.
But keep your pecker up, mate, and keep talking to us.
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hahhahhahahhahahahahhaha
I will try VERY hard to keep my pecker up.... cause I am a chick......... but your thoughts and wellwishes are still very welcome..... hhahahahahha :rofl; :rofl; :rofl; :rofl;
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:rofl; So pecker means the same there as it does here ! :rofl;
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:cuddle; :cuddle; :cuddle; Hugs Des
I also have no words of wisdom as I have never had to deal with a unit. But I do want you to know that we are here, as your friends to try and support you through this.
We don't have NxStage in Australia yet either but we do have home Haemo. As you know I was able to do PD which was home based. Since you have had one PKD kidney out is PD a possibility?
In regards to the nephrectomy, you had a rough time! I think that is out of the ordinary and please don't let that experience deter you from trying for a transplant. My native PKD nephrectomy was straight forward and without complications. Yes it was a large slice under my ribs (no removing that monster laparoscopically) and yes it hurt, but after a few weeks I was feeling better. I still get twinges and a pulling feeling, but boy do I have some room in there now!! A transplant will be the same..... shitty for a few weeks but slowly you will feel better. It is worth the risk.
It's hard being a mum and a dialysis patient. That I really understand! I struggled, and still do, with all that a "normal" mum can do Verses a "dialysis" mum. You just have to do what you can physically and emotionally squeeze in. Kids are amazing in what they adapt to.
"Strength is taking a look at where you are and, from there, getting to where you want to be, no matter how hard it is or how long it takes to get there." I know you have the courage to get past the barriers. :cuddle;
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:rofl; So pecker means the same there as it does here ! :rofl;
Yes, That is why this is SO funny,,,,,, I really enjoyed the laugh.
Hehehehheeh :rofl;
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Wattle,
It has been lovely to here from you...... :flower; I am really trying my hardest to just get on with it.... mostly it works but somedays are just harder than others.
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I'm absolutely mortified...it means 'keep your chin up'...not what some of you think! Sorry, Des.
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To Des and everyone, I have read your post and scanned through the others, I myself have been on dialysis for 3 years this past October. Everyday that I get up for treatment the first thing that goes through my mind is that I got to get ready for dialysis. The next thing I'll ask myself is why? Afterwards I'll get ready and head on out to treatment. I know its hard and reading everyones post makes me happy to know that I am not alone in regards that we all suffer mentally. What makes me happy is that being a member I see the support from one to another. Going through dialysis puts a big impact on our lives. I actually have spent more time here talking about my situation than talking about it to person to person without getting a crazy response. Maybe its because we are all on common ground here in this forum. I don't know.....what I do know is that every member here welcomes all of its new members with open arms and are ready to show support, compassion, and advice!!
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It has been twelve years and I would still rather go shopping than go to dialysis. I still flinch at needles and have had to talk myself through remaining calm while thy use the new fistula area these last two weeks. I have wanted to run and hide, but I tell myself I am a big girl and can do this again and again and again and again......
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I had another dreadful dialysis session on friday night..
I clotted up so badly that when they removed the needle from my arm they "pulled" and "Pullled" to get the remaining clot out of my fistula. It was a very long stringlike red jelly coming out of my fistula. :puke;
Now this is still ok..... what freaked me out was that 3 staff members were trying to force the machine to work for at least a half an hour before that, none of them realised that I was clotting. So.... They were pushing a very large clot into my arteries..... :stressed; I hate being so helpless.
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Des, just wanted to say how awful!!!! Hope things improve... and quickly
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they "pulled" and "Pullled" to get the remaining clot out of my fistula. It was a very long stringlike red jelly coming out of my fistula. :puke;
Yuk! I've had an inch long clot pulled out just like you describe — stringy red jelly :puke; :puke; Must have been awful for you :cuddle;
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Dialysis isn't a particularly dignified process, is it. ::) What did they say when they finally realized you were clotting? Any words of explanation or apology?
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Oh goodness Des I am so sorry you are having to bare all this. I am thinking of you and believing you will pull through. When I first started D I would just cry all the time...sometimes still do when I have a bad day with my students and I am overwhelmed at work I cry and cry on the machine. I am a big baby....
take care
xo,
R
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Hi Des....Really sorry you are having such a bad time with your dialysis. I had a bad time in the beginning but in the last six months I have felt terrific and life is really good for me right now. As for the "Pecker", Aussisms can be misunderstood. Poor Bruno! Keeping your pecker up means keeping your chin up over here. But if it gave you a good laugh then all the better.
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Now this is still ok..... what freaked me out was that 3 staff members were trying to force the machine to work for at least a half an hour before that, none of them realised that I was clotting. So.... They were pushing a very large clot into my arteries..... :stressed; I hate being so helpless.
:Kit n Stik;
3 Staff Des
Members
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We all hate Dialysis thats why we are here..... I get real tired of doing it every day..... six days a week for 4 hours and 39 minutes every day ... and then there is the set up time..... boy....there is got to be more to life that this...... but this is what gives me life..... and when I cheat and dont dont my D.... after a couple of days .... I am reminded how badly it feels..... I feel so good when I do D ...... that I think I dont need to do it.... untill I dont...
Des.....hang in there.... we are here for you... each and every day.........
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Tyefly, you do D with NxStage for 4 and a half hours six days a week? I thought the whole idea behind NxStage was that you could do shorter sessions more frequently!
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MM,
They had nothing to say.... just that they thought my clotting was due to the higher HB.
I just want to say that I spent Monday night crying at dialysis again. I have been at it for 8 months now and every second of it has been filled with contempt. The process ,the staff, the beds, the time........ now that I am thinking about it it is like doing time in jail or comunity service. :police:
. You are forced to do it
. You are in for life
. The wardens are animals
. The food is bad
. The beds are uncomfortable
. You have no say in what the keepers do or don't do
. The torture - of course how can I forget about the torture
:)
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:grouphug; Des :grouphug;
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Des, has there been any word about your potential donor that you posted about earlier? I honestly think that you should pursue transplantation as far as possible. I would like to think that eventually you'll get used to D and that you will become more "accepting", but I really don't know if that's true. To blithely opine that things will get better is to breezily dismiss your very real resentment of the whole thing. I don't blame you one single bit. When I start D and if I'm in clinic, I suspect I'll be just like you.
Can you find out if the prospect of home hemo might be available in SA any time soon? If you could do something like NxStage, would that make it all more bearable? I haven't gotten any answer from the company regarding plans to bring NxStage to SA, but perhaps if you were to make inquiries since you are there, perhaps you could find out more.
I'm so sorry this has been so awful for you. I think about your situation often. I get glum and frustrated just thinking about it. :cuddle;
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Hi Des,
Is D going any better for you? Hang in there!
xo,
R
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Oh, Des, I feel so badly for you. I keep checking in to see if things are improving and sadly they are not. I think rsudock and I were both typing the same thing at the same time - Hang in there!!!!
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Des I saw on another post that now you have kidney stones because of your binders....oh goodness! hang in there!
xo,
R
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Morning all.
I had a dreadfull treatment last night. I got into a serious fight with a staff member. I called the regional unit manager.
It all started when I insisted that she attended to an alarm. She replied that it is not her patient.To which I said, so if someone is dying and it is not your patient then that is that?
She called me a "big mouth" to wich I replied : " get me off this machine then we'll see who's mouth is the biggest"
:sir ken; :banghead; :Kit n Stik; :stressed;
ps. she is getting some warning or something
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The techs in my center are experts at ignoring alarms. I set mine off on purpose once. I waited for my bp cuff to inflate and flexed my arm until the alarm went off. It took 3-4 minutes for anyone to even come by to see if I was still breathing. Scary.
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While I can certainly understand that people can be depressed about the Big D - it really pains me to hear stories about staff that don't respond. I can't for the life of me understand how these people can be so unfeeling. Maybe we need a union to fight our corner.
Dialysis is never going to be fun but a caring and attentive staff can make it a lot more tolerable.
Des, I wish there were words to use that would ease your problems. I think Richard was correct when he suggested a professional. It does appear (remember I am not a professional or anything close to one) that you need to do something about what appears to be to be depression.
Hope you make some progress and soon! :bestwishes;
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I like my staff, however I have trained them to come to alarms. One night it beeped for twenty minutes- I timed it. I raised such a fuss, three people came running to see what was wrong. Since then, they seem to come get the alarm before I alarm.
Des all I can do is send you Zen Hugs :grouphug; :grouphug; :grouphug;
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Depression....
I must be in total denial or something. The unit manager also suggested that I am suffering from depression. She thinks that that maybe the reason why I complain about everything in the unit. Well if this was depression why would the other 20 hours of my day be fantastic and super normal until I walk into that stupid unit? I really really have a wonderful time working and spending time with my family. I have accepted dialysis - I just don't like it.
I really need some input here. Can I really be suffering from depression and not know about it???
So many people has picked it up but not me, How in the world is that possible? If so how do I go about fixing it?
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Well, would it be any wonder if you ARE depressed? Look at what they're putting you through there on that unit; how could you NOT be depressed? Totally normal, if you ask me (not that anyone was). ;D
There has got to be some way out of there!
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Sounds like a bit of excuse to me to cover up the fact that they're not doing their jobs properly and creating an environment that isn't the best for you. You may well have some dialysis related depression - most of us do - but to use that "reason" to invalidate your complaints seems a bit rich to me.
I'm in a hospital unit - they come running whenever a machine alarms. OK maybe not running, but I can't think of a single time an alarm has gone longer than 30 seconds - 1 minute max. Obviously if something serious is happening they come much quicker.
I would consider a machine left alarming for 5 minutes to be unacceptable (and if it was my machine I'd damn well reset it myself, to the best of my ability).
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I'm no expert on depression, only know second-hand about it as my brother-in-law suffers from it. He is under treatment that has been so beneficial. When he was really bad with depression, he did almost nothing: laid around all day, slept a lot, couldn't get motivated. I feel that your unit is just such an unhappy place to be that being there is getting you down. And how to fix that, I don't know. Dialysis is hard enough without having to be part of a treatment unit that seems to want to bring you down. If you don't have some trust and a bit of rapport with the staff, I can't imagine how difficult your time there is. Sending you prayers that things improve.
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Morning all.
I had a dreadfull treatment last night. I got into a serious fight with a staff member. I called the regional unit manager.
It all started when I insisted that she attended to an alarm. She replied that it is not her patient.To which I said, so if someone is dying and it is not your patient then that is that?
She called me a "big mouth" to wich I replied : " get me off this machine then we'll see who's mouth is the biggest"
:sir ken; :banghead; :Kit n Stik; :stressed;
ps. she is getting some warning or something
What a beeyatch!! It amazes me what people who are in positions of power over other people can get away with! As a teacher I have always felt (and been told by administration) that I need to bend over backwards to calm down parents/students and to make them happy, even if I don't agree with it. Then I hear stories like this where people just go around and treat sick people like s***...makes me so mad. Makes me want to tell my drug addicted parents, "Well it is not my fault you haven't bothered raising your child and now I am trying to hold him accountable. Get off the crack and parent why don't ya?" sorry I digress...
sorry Des this is happening...can you get out of there at all?
xo,
R
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I went to see the doc..... verdict : I don't suffer from depression just a bad case of Ihatedialysis-disease. :rofl;
The only cure is a transplant.
All jokes aside.... I am doing ok. The other 20hours of my day it is only the 4hours that I am stuck in the unit.
I am ignoring everything and everyone... I will be deaf in a month or two as I turn my headphones up so loud that I don't hear any alarms going off. It is like I am in my one cocoon. Cool.
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If you were clinically depressed, you wouldn't be enjoying your non-dialysis time. I agree...you just vehemently hate dialysis, and given the description of what goes on in your unit, I'm not surprised.l
Ensconsing yourself in your "cocoon" is a very useful coping mechanism. That's what most people do...they find ways to distract/entertain themselves while dialyzing. So, good for you!! :clap;
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I love my world... and try to pretend everyday.....nothing wrong in dreaming....
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Des I have been turning my ipod really loud in my ears too! So thankful to have that device. It made me appreciate the poor folks that had to suffer through dialysis a long time ago with no wireless internet, iphones, handheld nintendos, ipods, kindles, etc.... oh how dialysis must have been so much more excruciating!
xo,
R
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:cheer: for iPods - I LOVE mine for the hospital visits and the sleepless nights. I will make sure to have on board as well for any dialysis sessions.
Just KNEW you were only D depressed - too happy with the rest of your life for anything else.
Happy cocoon-ing!