Ever think of not going to Dialysis...

[Tinah1968]

I have been on Dialysis for 2 months now and I am just at a wall right now... I know that this is my life, I know that this is what I have to do... I know that. I just some days (Like today) Do not want to go to dialysis anymore. I am 40 years old and I was very out going always doing something, going out with friends, going to the movies, and going Dancing... Now I am confined to a Chair for 4 hours 3 times a week, not including the prep time and the time to get off. Work 45-50 hours a week and that is about the only time I don't think about Dialysis. I know this is not really a rant... I just hate it sometimes. Some People are just so happy all the time and I am not sure how you do it... I want to be happy about it...  Sometimes I even think about just not going. Like if I was gonna play hookie or something. I don't know anymore..... Anyone ever just want to not go anymore....

[paul.karen]

I see where your coming from.
Play hookey and you may be passed up on a TX list..........

One question.  Truly do you feel better or about the same no im not an eyedoctor..

[paris]

Maybe others aren't as honest with their feelings as you are.  I hope it helps to vent a little. I firmly believe we can't be "happy" every minute. Some days we just aren't happy. When someone's life is so picture perfect and full of rainbows and butterflies, I have to wonder.  Sad and mad are important emotions also.  I am sorry you are dealing with this at your age.  Sometimes life isn't fair.   

[twirl]

I understand - every M,W,F at 4:15 am I do not want to go to dialysis -- and sometimes the night before dialysis I get cranky ------- I hate to say this but you will get used to it --- it will not be any better but you get used to it --
I used to teach and go at night on the last shift -- going very early in the morning is so much better but I had to stop teaching --
cheryl

[BobN]

I also work full-time and do the MWF dialysis routine, and I can completely understand the way you feel.

I try to make the best out of the time I have.  Tuesday evening, Thursday evening, Saturdays and Sundays, its like ooo-yeah, what do we do next?

There's no reason to stop doing the things you mentioned.

But, I can assure you, the solution is not to skip treatments.  It wouldn't give you that much more free time, and you would feel lousy to boot.

As you said, dialysis is our reality, and it keeps us kickin' for another day to wreak havoc.

Keep your spirits up.  When you feel yourself getting down, try watching a funny movie, or find another reason to laugh.  I guarantee it will make you feel better.

[monrein]

Tinah, I'm a very positive person on the whole but happy all the time???  Of course not!!!!  I agree with Paris that those who claim to be cheerful all the time may just be protesting a bit too much and I too neither buy it nor trust it. I am lucky in that I seem to be able to talk to myself quite effectively when I feel down and manage to pull myself into a different space and then yet sometimes I just need to go to bed and hope tomorrow brings a different outlook.  I choose very carefully who I vent to and when because I know that the very strong feelings that we experience can be scary and threatening to even those who love us and care.  I have a couple of friends who are not at all afraid of my powerful emotions and I can say anything without having them run for cover or check me into the nearest mental facility.

BTW, I personally believe that ambivalence is the stuff of life, D or no D, and it helps to really, really know deep down inside that all things will eventually pass...all things, the good, the not so good and the truly unbearable.  This helps me  to stay present in my life, to enjoy the good, no matter how tiny it may be, as well as to endure some of the extra burden that we  ESRD people must cope with. 

Life isn't fair.  And sometimes even knowing that we're luckier than many many others doesn't help it seem any fairer.  Bad things do happen to good people and vice versa.  I try hard to handle this crap with grace because that's all I can do.  I know you can hang in there too and I hope you get a shot at a transplant which can help turn things around for a while at any rate.   

[kitkatz]

Oh hell YES! I think about not going every time I set foot in the car to go. I tried to get hubby to go to the mall instead, but he takes me to dialysis!  Darn it!  However I have not missed a treatment in almost ten and a half years.  Some days I have to just put the head down and go!  It is a pain the butt to have to go three days a week.

[dh514]

I do PD and most nights I just hook up and don't think anything about it, but some nights it is really hard to think that this is my life. I don't think we would be normal if we didn't get down sometimes.

 

[KICKSTART]

I dont think even people who are not ill can be happy all the time , my ex best friend used to moan like crazy , she made me seem like a saint  . Im not sure how you people out there work and do dialysis and i take my hat off to you! If im honest , yes i have thought about skipping dialysis and i HAVE done , but its far easier for me because im on PD  so i can get away with it ,without really paying for it. I dont do it often but just once in a while it makes me feel normal !

[Tinah1968]

Thanks guys for your input  at least I know I am not alone... I won't not go becaseu that is not how I am made. I am a fighter... I just sometimes get these feelings that want to take over and I gotta keep fighting it... I will always do what is best... and I may not like it but i will do it... I have to find a way....

[kidneyless_In_PA]

I think about not going every treatment and then when I am on the machine I all the time think what am I doing here. Most is because of whats going on but some has to do with the time on the machine 3 hours and 30 minutes. I know I will never get back the time on the machine to do something else but at the same time I know I have to be there so I can live. 

[Lucinda]

HI Tinah

I have been on dialysis now for almost five months and  only now seem to be falling into the routine.  While you are getting use to dialysis, my advice is not to try and do too much else.  When I first started dialysis I tried to keep up with my normal routine which included work, golf and the gym every day.  My life just got totally out of whack and I was all over the place.  Then I fractured my ankle and couldn't go to the gym or golf so I had to stop.  Little by little now I am including the things I use to do before dialysis and I am a lot happier now taking it more slowly than going like a bull at a gate to prove that I could still do all the things I could do before dialysis.

There is definitely an adjustment period and allowing for your treatment time is the major adjustment.  My suggestion is to clear your head and take it one day at a time.  One morning - not too far in the distance you will wake up and realise how well you are handling the change and you really will start to feel better about everything.  I think when you initially start dialysis routine is the most important thing and then after a while you can ease on the routine - not your dialysis hours - but everything around it.  I found my family and friends did not understand at all at first.  I use to get comments like...How lucky are you that you can put your legs up for four hours and just relax! They are the frustrating things you have to deal with.

I have never done this before in my life but until you are in a routine....PUT YOURSELF FIRST.  Don't do anything you don't want to do and eventually when you are feeling more comfortable with your life changes you will go back to doing those things at your own pace.  Just don't put too much pressure on yourself.  If you do that I think you will find that going to dialysis at the scheduled times won't be as much of a hassle.  I know it is not easy. xxxxx

[glitter]

it helps to really, really know deep down inside that all things will eventually pass...all things, the good, the not so good and the truly unbearable.  This helps me  to stay present in my life, to enjoy the good, no matter how tiny it may be,

that- is some good advice for anyone..ty

[Rerun]

I really don't know why I keep going because I hate it so much and I hate the people too.  I guess I just want to live another day. 

                                                       

[jbeany]

I'm with twirl - That instant mental groan when the alarm goes off at 4:15.  Uuuuugh.  I've had weeks when I'm a cranky ***ch, and I can't manage cheerful to save my life.  I just keep slogging thru, and sooner or later, I remember that I've got a lot of good things in my life.

I think the first couple of months are really hard.  It's such a huge switch to your lifestyle, and it's really hard to readjust to the physical limitations that come along with being on dialysis.  My hat is off to you for managing to work and do dialysis.  I can barely manage a couple of days a week for a couple of hours at a time.

Hang in there.

[marti824]

I think we all feel that way, I hate going to dialysis every time.  most of the time, I grin and bear it but there are days when I just can't smile.  that's when the social worker and the nurses are up my butt wanting to help me.  you want to help me, leave me the hell alone.  they say, we don't like to see you down, well, excuse the shit out of me!  I'm entitled to be down every once in a while.  "Is there anything i can do for you?"  they ask, "Hell yes, sit in this chair for me for a day."
that was my rant for the day.

[Chris]

When I started dialysis at my first center, the experience rubbed me the wrong way. Ididn't care for everybody is friends here attitude and that other people want to talk to you. I was use to doing medical things on my own with diabetes and at that time it was not col to be doing blood test or insulin injections in public (in the washroom). Then having the doctor talk outloud about your case and test results was unnerving. I really didn't care for the Social Worker, she just irked the crap out of me and the nurses didn't install confidence. When they attempted to use my fistula for the first time 3 weeks after starting there, I felt it was way to early. I was in the hospital for a month prior to starting there and that's when I had my fistula surgery. When they attempted, they stuck me a few times and couldn't get it going, but sure caused a lot of pain, swelling, and bruising. Back then there was no internet to look things up and no one explained how things go or work. I started skipping sessions and the last time I was at that place for dialysis, I just had enough with them. They couldn't get the needles in right and had enough with the pain and didn't want anyone attempting to gain accesss and I left frustrated. The doctor had me come in for an apointment and that became confrontational. He had 2 of his dialysis staff in the room and with that I got even angrier at the time and told him I'm not coming back, nor seeing him as my doctor anymore due to the way things are at his dialysis center. Since the hospital was  across the street I walked over there got in touch with the right people and found a new doc and dialysis center that was much better. I still have that doc too. However even at the my new center, I did not go on a few occassion. I just did not want to go or couldn't go de to transportation issue. I wanted peace and quiet from other dialysis patients who come in and complain about everything or do not follow the doctors orders. I just want to be near people close to my  age range. I was the youngest one there at the time and it was very uncomfortable, but it was like that at the other place to. But even with missing a few dialysis days, I still got a transplant.

I think it is normal for one not wanting to go just like not wanting to go to work or school and playing hookie. Sometimes you just need a break and alone time from certain things.

[Ang]

i  myself  get  majorly  pissed  at  times  but  not  going  is  not  a  thought  that  i  entertain  as   now  the  consequences  of  not  going(feeling  like  #$%^)

i  look  at  it  as  my  part time  voluntary  job,  and  i  get  to  see  my  alternate  family  3* weekly.

[RichardMEL]

I think everyone thinks about not going to dialysis from time to time. I also think anyone who seriously looks forward to dialysis or WANTS to go is probably in worse emotional shape than most of our kidneys!!! 

I see dialysis as my "time out" in a way. I sort of have developed a bit of a routine that I leave work and go to D (or on Saturday I sleep in and go) and it is my time to myself (well mostly) and I enjoy that aspect of it. I suppose like businessmen going on plane trips where they are essentially cut off and can use that time as a bit of a timeout where the phone won't constantly bug them and that sort of thing. When I have my 5 hour "timeout" I can do stuff for me.. like watch crappy TV programs or films on my laptop, or listen to the footy or whatever.

Now sure I could have a "timeout" at home in my bed  or on my couch with my cat, but I need to go to dialysis to live my life.. and because most of the time I enjoy living my life there's a reason to continue with dialysis.

I've never seriously thought about not going though (but then again I understand here at least they will call the cops if you don't show up to your unit and haven't notified them!). I guess now it is also a routine more than anything (today was actually my 3rd anniversary of dialysis) and if I didn't have to go (yes, that's the dream isn't it?) I'd probably feel very odd on a Tuesday/Thursday and Saturday afternoon.

Anyway it's all very normal to not want to go.

[dwcrawford]

Not very often, Tina.  Just about 3 times a week...

[Chris]

Not very often, Tina.  Just about 3 times a week...

[dwcrawford]

but I always go anyway, Chris...and Tina...

Monday I want to try and get the camera to work so I can show you guys how much fun I have up there.... lol
I know you've forgotten.  But  I'll try the touch screen first.

[Chris]

At that time,my attitude was different too about dialysis and I have gotten older now too. When I do go back on, I'm sure I'll feel like I don't want to go, but will unless sick.

[sumodidit]

I am one of those happy people but there was a time where I was real quiet and kept to myself. the workers from the clinic use to be scared of me cause I was so quiet. I think there will always be that hatred for dialysis in the back of our minds even when we get use to it. there have been some days where I would skip dialysis and the idea of skipping would be worse than going to treatment itself. When I accepted it, I started moving my life forward one day at a time instead of just sitting there and crying. I was able to become friends with the staff, started my own business and was able to gain some of the staff and the clinic and doctors as my clients. I think the part that makes me happy is that the people at the clinic look past the idea that I am a patient and that I am a person trying to live a normal life and have gained there respect.

[Des]

today was actually my 3rd anniversary of dialysis)

Happy "D"day !!!! Did you take the staff choc cupcakes?

(Sorry off topic)