What do you wish your family understood about kidney disease?

[Sunny]

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.

[Beth35]

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.

[gothiclovemonkey]

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??"

[paris]

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!!

[gothiclovemonkey]

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?

[Riki]

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*

[RichardMEL]

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  ). 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??! 

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!

[Riki]

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.

[okarol]

I wish my family understood that although Jenna is currently stable at about 15% - 18% kidney function, she still is not "fine." 

[Constantcrave40]

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.

[albiecl]

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.

[wrenchturningredneck10]

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

[chook]

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.

[Hazmat35]

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! 

[paris]

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!! 

[Des]

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. 

[MooseMom]

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.

[gothiclovemonkey]

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.

Couldnt have said it better... I second that notion lol

[del]

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.

[Scarlet]

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..... 

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"   

 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.

[VintageVera]

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!

[chook]

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.

[Stoday]

That all brings to mind Phillip Larkin's poem This Be The Verse

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.

[Mizar]

 
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.

[VintageVera]

DEAR MIZAR: That is a sad story, alright. Maybe you could send him the link to this discussion? LOVE, VERA