Has kidney failure turned me into a demanding monster ?

[RichardMEL]

Karma bus baby... karma bus!!!

[cherpep]

Sad.  Really sad for her.  Your message sounded perfect - friendly and still leaving it open for the future possibilities.   Hers was not.  It's too bad your friend wasn't there for you, but it sounds like she never really was anyway - you were there for her.  It's OK to grieve for that loss, but I'm really glad that you are moving on.   You deserve better. 

[paris]

I am sorry Kickstart!   I got an email from my "best" friend of 25 years.  First she was complaining about how much sewing she has to do making bridesmaid dresses and then threw in a one liner " How are your treatments going?  Is the last one this week?"   How do I answer that? - The infusions are fine. I am fine. Thanks for checking on me during the past month and for not coming to my son's wedding when you rsvp that you would be there! -  Oh well, what are we going to do?  Their lives go on and ours have become very different.  But, we are still here and making the best of the situation       You are doing great, Kickstart!  You inspire us to keep moving forward, too.   

[KICKSTART]

Paris .. we are never going to change these people , we are never going to educate them. I just tell myself ..SHE has lost a fantastic friend not me ! and you should do the same. We are stronger , we CAN make new friends , we can offer something , whereas these so called friends .. well who is going to stick around them when they see they are' takers 'not 'givers.' My friend was what i called a freeloader in a sense , if there was a meal/.bbq/party going she was there , but never returned the invite , so sooner or later people stop inviting them. I bet in 12 months time its not me sat here with no friends , but i have an idea who WILL be sat there with no friends. I havent time to waste dwelling on her i can put my (little) energy to much more use ! And seeing your friend didnt come to your sons wedding ..you could have sent me her slice of cake !!!!

[paris]

And the five course sit down dinner that cost a fortune!  And you still pay for the two people who said they would be there and didn't show up!  I should have asked for take home boxes!    At least we all have each other, even if we are an ocean apart!   

[jamoman]

I think people like that(most of which are healthy ) are scared of what we have become(most just a shell of ourselves). weird diets, restrictive fluids, me personally loss of over 100lbs., always tired. but don`t waste the time you have on such foolishness(people like that).

[Kitsune]

Richard , i can see what you are saying but I'm not sure you see what I'm saying .. lets see if i can make myself more clear.
You have a best friend , you text them , don't you do that expecting to enter into some sort of conversation? You cant say shes too busy to take what 30 seconds to text me back? (and don't forget she on HOLIDAY) so its not like shes at work and its difficult to do. She expects me to drop everything and text her straight back and yet I'm called 'nasty' when i bring this point up. In fact Richard she has even said to my face , oh i saw it was a text from you so i just deleted it , i knew it wouldn't be anything important. Shes told me , i dint know how easy i have it and how lucky i am not to have to work and up to now Ive just taken it .. well I'm sorry no more. I once opened up to her and thought id see how she would react , i told her how lonely i was and how i wasn't getting out much ..her answer... plant some hanging baskets ! My gawd is that all i can expect from life. I don't depend on her for my life, but it would be nice if she took a bit of time out for me ,funny thing is , she didn't have a problem txting me everyday when i used to have a horse, because she wanted to ride it. She had all the time in the world for me when she wanted to go drinking and i could drive , so no Richard i stand by my original post, i think shes self centred and just plain ignorant !

I had  a "best friend" (Really more like an acquaintance) like yours too. When she found out I needed to go on dialysis, she was all ho-hum about it and said, "Oh, well at least it keeps you alive!". This woman never wanted to spend time with me unless she was bored and no one else was available to hang out with her, and then when we did hang out it was always to run errands and she acted like it was a chore if I wanted to go have a meal together and she would run me through a fast food drive-through instead and take me home after. Heaven forbid if I talked to her about dialysis or my problems, because according to her it was "all about me" when I did.

But wait! She did invite me to her daughter's birthday party a couple of weeks ago (after naming all the expensive licensed characters her daughter likes, presumably hinting at an expensive gift for this child, who I have seen all of twice in my life, and the girl is 2.), which was on a Saturday (one of my dialysis days, which she asked if I could just "call off or whatever.)

Yet only a day before, she couldn't be bothered to help my husband and I when we got some bad bus directions and were left stranded in the next county, saying, "Oh, I'd like to, but I have no gas.".  When I told her we had no money and no way to get home, she said (snidely, of course), "Well, I don't know what to tell you. I'm not coming all the way out there." We ended up paying $65.00 for a cab (my sister wouldn't help either. Nice sister, huh?) We are on public assistance and cannot afford a car, so we either go everywhere by foot or by bus..

Then again, this is the same person who made fun of me when I was fat, laughed at my musical taste, opened the passenger window of her car while I was sitting in it about 6 winters ago and drove through slush, letting it hit me in the face, all the while laughing and doing it over and over. This is the same person who went to all my family's events and ate her fill over the years, never inviting me to one of her family's events, and going out to clubs with other people and calling me the next day to tell me about it as if she was doing me some sort of favor by letting me hear about her life, since mine was (in her words) "so boring".

So why am I really surprised that she's like this.? I shouldn't be.

She had all the time in the world for me before I started dialysis, that was when she wanted me to help her do chores or or help her move, but now I guess I can just go to hell unless, of course she wants help carrying groceries or she's bored or wants presents for her daughter (who barely even knows me, no less.)

She would sit and cry to me about her petty little problems (one of her friends told her off, her kid's being a brat, work was SOOO hard, she got a flat tire, etc.) and how it must be nice to sit in a chair for four hours twice a week and just "chill and watch TV".

I don't know about any of you, but I have never "chilled" at dialysis and the sore a$$, cramping, headaches,  and not knowing if or when you'll get a transplant are a hell of a lot worse than bratty kids or flat tires anyday.

But, since her life's just ever so hard , I've left her alone to drive her own "WAH-mbulance" to "Poor-Me General Hospital." I've got real friends now.

P.S. And the hanging basket thing was a scream! My "friend" said the same thing, only it was fuzzy posters she suggested not hanging baskets when I said I was bored and lonely. I guess crafts and gardening are all we are supposed to do outside dialysis since we are so pathetic that no one wants us around. 

People like that we don't need, and that's why I dropped her after 22 years of supposed "friendship'. Who cares who long they've been around? If they're not a real friend, don't waste your friendship or your time. Their loss, I guess.

[KICKSTART]

Kitsune  I think your 'best friend' must be the twin sister of my 'best friend' I didnt believe anyone else could have a best friend like mine!

[jbeany]

Some people are just emotional black holes - when you are around them, they suck all the light and air out to the atmosphere.  I've dumped a couple of those "friends" in my lifetime, and surely don't regret the loss.  I've got real friends - the ones on the list that I call when I've got emergency fistulagrams, who drop  everything to get me to the hospital.  I'm not up to a lot things I used to be able to do for them, but I still do what I can. 

Kickstart, you're answer was perfect.  I'd be very busy from here on out every time she texts if I were you.

[Inara]

Leslie said that she lost pretty much all her friends once she started dialysis.  One by one, they dropped away or she dropped them.  She said that you wouldn't believe how many people thought she could "hook them up" once they heard the news.  Hook them up?!?!  She's on dialysis, not a crack dealer!!!

But in their place, came better friends, truer friends, REAL friends who have been there for her no matter what.  And, 9 years later, she's even gotten calls from a couple of old friends who now understand her condition and have apologized and now help me care for her when I'm out of town. 

So, who knows, Kickstart, maybe your friend will come around one day and realize just what a mistake she made by blowing you off?? 

[monrein]

I often ask myself how I would have reacted to friends in similar situations as mine, had I always been perfectly healthy and not had such an enforced deeper understanding of chronic illness.  I'm honestly not sure that I would have been the greatest friend.  We never really know how we'll react until we're in a given situation.
I feel very thankful that my friends are possibly better people than I am.

[KICKSTART]

I know what sort of friend i am and how i re-act. My ex best friend who has no time for me now ..once trapped a nerve in her shoulder (painfull i know) she took to the sofa , took morphine for the pain ! (poor soul  ) and lay there while everybody waited on her. I had kidney failure at that time and didnt live nearby ..about a 20 min drive away. I visited everyday to make sure she had lunch/drinks and COMPANY! She was married so it wasnt like she was on her own!. Pity she has such a short memory!!!

[Romona]

I try to be patient with people, but when they complain about various things I tune them out. I shake my head sympathetically. I want to scream, "your head cold, hangover, in grown toenail, zit....ect is nothing." If you are tired because you are healthy enough to ride your bike, go shopping, party all night.ect. Be thankful. People I didn't realize were my friends were great through this. Illlness does show you who your friends are.

[kitkatz]

I have one friend who really listens no matter what I tell her. 


And then I have all of the IHDers I know and talk to regularly on the board, who listen to the tales of dialysis I have!

[RichardMEL]

Wow Kitsune what a story! Talk about a fairweather friend.. and an ignorant one at that... also a real "user" (of people).... I love the attitude "at least YOU can sit in a chair for 4 hours and do nothing except watch TV" - like it's a freakin holiday we're having lazing around at the expense of others. Ha! Don't I wish! Or the notion that you could "cancel it or whatever" to come to the brat's birthday party. Umm yeah.. this stuff keeps me alive.. sure I'll cancel it... the results won't be pretty but it's not like you'd give a damn anyway.

Sometimes people's selfishness and lack of understanding or perspective is amazing.

As others have said these are the times you get to really know who your REAL friends are. The ones who will give a damn, and try and understand your situation. I do not expect people to truly understand(how can you unless you've been there yourself?) or to constantly try and prop me up, or show sympathy or anything like that (I'm not a charity!) but it's nice to know when someone appears to understand if I say I'm tired, or I can't make it to so-and-so because I've got D it's not because I'm blowing them off, or I don't want to go or whatever... that this is serious and it's what keeps me alive! I don't expect them to understand the diet or fluid restrictions, but to respect that if I say "I can't have that" - again it's not to blow them off or that I don't appreciate them offering me that drink or whatever... but I simply can't as much as I might want to... and so on and so forth.

Unfortunately there are a lof of people out there who lack the insight that perhaps things they are going to aren't quite as serious as others. I do not mean to put down others and I *know* everyone faces struggles of one kind or another in their lives (and often people facing more serious issues often won't let on) but it does sometimes seem that some people will whinge about relatively trivial things (flat tyre, feeling ill because of a hangover from drinking all night, etc) yet at the same time don't seem to appreciate some of the issues we are dealing with every single day. Still that's life and in a way those sorts of people are blessed that they have never had to deal with a chronic disease like the majority of us - and hopefully they don't have to - I wouldn't wish it on anyone myself.

[Des]

Oh my.. this thread is so true....

I have lost ALL my friends and I am not even on dialysis yet.

I work a 40h week and I am dogtired in the evenings... lifting my hand to feed myself is an effort.

Saturday we rush from one sportfield to another for my kids' sport and Sundays it is church and little bit of homework (mending and fixing)
I guess I do not have time to be a friend that is why I don't have any anymore.

This is so sad....

I don't have anyone to hold my socalled puke bucket or wipe my brow or feed my kids when I'm ill just my husband.  He is my everything.   

[marti824]

the line about the puke bucket cracked me up. My husband is the absolute best in everything, but that.  he has to leave the room. and it's usually with a "you're at it again, huh?"  comment.  I do love him though.

[Des]

shame .... little did they know when they married us through sickness and through health - what that really meant.

[carla13]

'friends' always call me up to moan about their health problems!! I think it's really funny! I have one friend who's type 2 diabetic (because he's overweight) who loves to call me up and tell me how ill he is. He seems to think that I lay on the couch all day eating peeled grapes and being wafted gently by large palm leaves.... I often wonder how these people would cope with a serious illness....
These same peoplpe don't want to hear about my problems, hence I don't tell them, so they think I'm perfectly fine... catch 22 I suppose, if you tell them you're 'moaning' if you don't tell them they assume that you're doing well, even if you're not....

[RichardMEL]

Well it's all about perspective I guess - and unfortunately(or fortunately for most?) they don't have perspective gained from experiencing(or having someone close experience) a chronic and/or terminal disease to know what it is like, or to put their own situation into the proper perspective.

It's also interesting when folks like the type 2 diabetic due to being overweight complain when chances are it's something they've brought on themselves(due to getting overweight and/or not doing anything serious to sort out their weight issues ***note I am saying 'chances are' because I recognise there are some people who are in this boat through no fault of their own)... yet for people suffering from ESRD most of us are due to no fault, and it's not like we could change our diet to change things, or stuff like that.

I have to be honest and say that before I was diagnosed the only time I ever heard about dialysis was from watching "Star TreK IV" where there's a scene where our heroes pass by an old lady looking very unhappy. Doc McCoy asks her what the problem is, she wails "Kidney Dialysis" - McCoy mutters something about barbaric medicine or whatever - gives her a pill and goes on his way. A little further on in the story as our heroes are escaping the hospital you see the woman all happy and elated and the doctors around her commenting "She's grown a new kidney!" and everything is right with the world. I would have had no concept of what really was going on there, and probably wouldn't have cared much - because that was my experience and perspective. Obviously that all changed when I was diagnosed and informed what the future would hold.

In a way I can't really blame or get upset with these sorts of people. I'm happy for them that if the most they have to whinge about is a bad cold, or feeling low because they partied all night or whatever... well I think "Lucky you to have your relative good health" because it is so precious. Only sometimes do I get envious or think "Look at what you're taking for granted!" - because I know if it was me and I never went through this stuff, I probably would be quite similar.

[dwcrawford]

sure glad you qualified that statement about type II diabetics...

[RichardMEL]

Thanks Dan - I didn't want to offend anyone who is there through things other than that which they can control. I guess whenever I think of type two diabetics caused by being overweight I think of this one guy we had in our unit for a year or so. He was(is) a big boy. Around 120kilos. Not sure what that is in pounds, but quite a bit. Anyway this guy is purely there due to diet and lack of exercise (he even admitted it himself once). The thing that frustrated me about this guy is that he was clearly suffering - he had to give up his job because he was going blind, and obbviously his kidneys failed... and the nurses and dieticians would talk to him about how important it was to try and get healthier to lower his weight which may stop the diabetes and the effects on his eyesight etc. He didn't do a thing. Kept eating junk food and doing bugger all.. and suffering more. I felt pity for him, but only a certain amount because this case was CLEARLY one where he had a choice, and for whatever reasons he decided it was easier to keep going the way he was and getting worse rather than trying to be proactive and doing all he could to help himself.

I recognise that not everyone is in that sort of situation though and I certainly didn't want to tar everyone with the same brush.

[Jean]

Also not yet being on dialysis, just suffering from the fatigue. I have also lost all but a few friends. Amazing, last year I was the belle of the ball and this year, nothing!! Really hurts my feelings in my small community when someone asks me, have you been invited to so and so's party and I have to say no. I have never been a social pariah in my life, and here it is, SMACK right in the face. I dont really know how to react to this, except to love the ones I still have more and smile at everyone else. To heck with all of them. Thanks for letting me rant.