Being on dialysis effect your personality or become more agreeable

[KT0930]

I've been dealing with ESRD my whole life, so like someone else said, it more formed my personality than changed it. However, each time I have a transplant fail and I go back on dialysis, I'm a little older and a little wiser, so I learn a little bit more about it and myself (look out next time, I'll know everything there is to know about it!!). When it comes to advocating for myself and anything to do with my health, I definitely have become more outspoken through the years. If I don't feel up to doing something because of the ESRD, I'll let people know it - mostly because I want them to know what an inconvenience it is and consider maybe signing their organ donor card. When it comes to other people, I've become a lot more tolerant. Since I have a lot wrong with me, but I don't look sick, I usually try to think maybe they're in the same boat.

[Stu]

I fully understand the losing friends thing. When I was no longer able to go out drinking etc, they seemed to drop off pretty quickly. I alienated a lot of people by getting angry with them for not finding the time to visit me on dialysis, and telling them so.

The few friends I still have are becoming more and more like email acquaintences now. I get an email from them every now and then saying "it's been too long", I think "Then pick up the freaking phone and invite me back into your life", and nothing ever happens.

As far as personality chages in the 13 or so years since I first got sick: I certainly suffer fools a lot less. I just can't handle someone whining about their headcold, or their sore foot or whatever. My wife keeps telling me that it's still the biggest thing going on in their lives, so I should be sympathetic, but it's just so hard to give a damn about someones cold when you're on your way to dialysis.

 

[keefer51]

I have become mellow but most of that is due to age. At 51 i can look back and see the many mistakes i have made. Kidney disease is like a time bomb with me. I knew that someday i would be on dialysis and even go through a kidney transplant. I think once you except it you are able move on. I guess the word i want is compliant. All of my friends are in Nashville. Moving back home to Pennsylvania where my family is has helped me. Donna, I still go to Seaisle city and Ocean city NJ every year on my birthday and have fond memories of when i was well.

[fluffy]

i've had a bunch of friends sort of fade off on me, then there were some i just didnt have the patience for after i started dialysis. then again i dont do very much, i dont party anymore i dont jam with a band anymore. My idea of a good time is going to a movie or browsing in a bookstore that and reading.

[st789]

What can friends or family members actually understand what we go through with dialysis.  They are all busy discuss about the newest cars and too materialistic.  This is not to be mean spirit.  Just wait until, if they have misfortune of hooking to the machine or called dialysis.  Yes, I sometime do feel isolated except when I am here with all of you.  Sometimes I don't bother communicate with  people who I think are clueless and have no
sympathy for others in difficult situations.

[angela515]

What can friends or family members actually understand what we go through with dialysis.  They are all busy discuss about the newest cars and too materialistic.  This is not to be mean spirit. 

Not everyone... my family is great... very supportive and caring and helpful...I did not want my family in the dialysis center with me.... I don't think people should unless they are very young children or something.

[George Jung]

What can friends or family members actually understand what we go through with dialysis. They are all busy discuss about the newest cars and too materialistic.

Much too often it seems.  Less is more in my opinion, materialistically.

[kitkatz]

Ever feel all alone in a crowded room? That is how dialysis makes me feel.

[Lulu]

Amen Kilkatz!!!,
I am not on dialysis yet, but that is how living with chronic illness has felt for me. As my diseases progressed I have watched my friends and family fade like exits on a long, long highway. Now I am just lost on a dusty country road all by myself. It is very lonely and I feel so much anger towards my family I can't even begin to think what it will be like when no one comes to see me in the hospital after a transplant. I take that back I spent my whole 20's in and out of the hospital. The only tome my Mom flew out to see me was when my doctor called my next of kin because I was in I.C.U. with a temp of 106.5 degrees. The docs jacked my up with solu-medrol (100mg three times a day!) and even when I got out of hospital I was overmedicated and I ended up gaining 100lbs! I remember the feeling of my skin ripping from the rapid weight gain. I was 21 and had just started a new college and had (key word had) a bunch of friends. None came and saw me and after I came back to school and gained more and more weight from the meds they all vaporized. Since that time in 1991 it has been a downhill experience with making and keeping friends ever since. I look normal and surprisingly healthy. No one can comprehend how sick I am. It is frustrating and very lonely.

[goofynina]

Lulu, do you see what is happening,  your friends and family  are fading but you still have US      We'll never leave you,  Did you see Tubes avatar when it said "I love my Computer, all my friends are in it"   That is how i feel exactly.   I would much rather stay at home, jump on the pc and read how all your days are going than to go somewhere that i know no one will even think twice about my illness.   This site makes me happy and it has been my Godsend, all of you have been MY main source of support and you all have given me soooo many reasons to smile and laugh again, you all know how i feel, what i feel, why i feel and words cannot express how much i appreciate all of you.  XOXOXOXOXOX to all and great big Goofynina Hugs    Hang in there Lulu, come often and things will start getting better for you, i know it will 

[Lulu]

I just wish my computer could give me a hug, hold me when I cry and help me when I don't have the strength to help myself. Don't get me wrong I am a very tough person. I don't know why, but my emotions just flow when I type and talk with everyone here at IHD. My husband is very supportive, it is a big load to carry and I do my best to manage it all. I just wish my Mom and Brother would be more involved. I have begged and pleaded and I am done doing that. I guess I am just mourning the loss of them. It almost feels like they are dead to me. I can't keep just talking about the weather with them and listening to my mom go on and on about her cats and how there getting old. She actually told me one her cats had kidney disease!!! All I could think is what about me Mom? What about me? I have cats too. I am just rambling. It feels really good to be understood and know all you guys and girls are there. I just wish when it came down to brass tax that my Mom and Brother would actually give a sh*t about me. I think I could die tomorrow and they would not notice for at least 6-8 months until they made their semi-annual phone call. It is a sad feeling. As soon as any new friend finds out I don't work and have multiple illnesses they shy away. I guess I just have to find a way to get over it, all of it.

[Lulu]

Sorry goofynina, I forgot to say thank you. Please forgive my very poor manners. Thank you from the bottom of my heart.

 
Lulu

[okarol]

   LULU   

[st789]

Hi Lulu, I am in the same boat as far as m knoy relationship with my Mom.  She rarely mentions how are you doing physically or medications wise.  Friends have no clues of how sick I was.

[okarol]

Hi Lulu, I am in the same boat as far as m knoy relationship with my Mom.  She rarely mentions how are you doing physically or medications wise.  Friends have no clues of how sick I was.

Hi st,
I recall that you first joined IHD you mentioned that you were pretty low key about your disease because you didn't want it to limit your education and work options. I think maybe you did a REAL good job and perhaps family and friends did not see how hard it was for you. And I think sometimes those around us don't want to see, it hurts to see a loved one struggle, so we only see what we want. Jenna and I had the opposite experience, I wanted to know everything, explore every treatment and understand every detail, and she would have preferred to detach from it all and hope somehow it was just going to go away.
Now you've got a transplant and rather than learn all about it, maybe your mom thinks you're cured. That's why it's good we have each other here - a community of people who get it!
Next time some of us So. Cal. people meet you should join us!
Take care,
Karol

[Lulu]

Hi Lulu, I am in the same boat as far as m knoy relationship with my Mom.  She rarely mentions how are you doing physically or medications wise.  Friends have no clues of how sick I was.

Jenna and I had the opposite experience, I wanted to know everything, explore every treatment and understand every detail, and she would have preferred to detach from it all and hope somehow it was just going to go away.
Next time some of us So. Cal. people meet you should join us!
Take care,
Karol

st - Sorry to hear your Mom is so similar. It is so painful to have family basically turn a cold shoulder merely to protect their own feelings. I am still pondering if I should try one more time to get through to my Mom. I just can't handle having it all washed over and the subject changed to the fricking weather!!

Karol - I would pay milions, bazillions, katrillions of dollars to have a Mom like you. Your daughter is sooooo lucky and blessed. Maybe you can suggest a way I can get through to my Mom?


EDITED: Fixed quote tag - okarol/moderator

[okarol]

Lulu,
I wish I had an answer. My mom is actually more like yours and St's - I wish it were different - she was never really emotionally available to me. I still have a relationship with her, but my expectations are low. Our relationship is not the one I want, but I finally realized she just doesn't have much to give. I have some friends who are really strong caring women, and I go to them when I need support or advice - my friend Barbara told me "Friends are the family we give ourselves." Sometimes it's better to count on people who want to be there, and not try to change those people who don't. I know that probably doesn't help, but when you have your own kids, it gives you the chance to be the kind of mom that you dreamed of - which is really great fun!