I really hate this disease!

[Des]

I started the 5 Apr with dialysis and I hate every second of it. I hate how it makes me feel. I hate sitting there for hours at a time. I hate being away from family and friends. I hate that I can't go camping when and where I want. I hate the bed, the chair, the tv and the non-working remotes. I hate it that the staff at the unit don't keep to my appointment times and how they have no urgency to get me up on the machine. I hate worrying about what to eat and what not to eat. I hate it that my hair is falling out. I hate that I am too tired for just about everything. I hate it when people just don't get it. I hate that I cannot make any long term plans with my life. I hate that I "lost" my job. I hate it that I am too healthy to go on dissability but too sick to do anything else. I hate that I am loosing friends. I hate that this disease has taken over my life. I hate that my kids would rather tell their father about events because he is actually there to take them. I hate taking medication. I hate the same stupid disgusting toasted sandwidches that they serve at every dialysis. well I just hate it all!!!!!   

[monrein]

  

[Dianejt]

 

[Treasure]

Ditto, Des. Only, we don't get sandwiches, of any kind, at any dialysis center I've been to.   

[Brightsky69]

I hear ya!!  Is there anyway you could try peritoneal dialysis. It's way better in my opinion. You do have alot more freedoms. Dialysis sucks either way.....but at least we are still alive. 

Hang in there!!!

[Des]

Thanks... I am hanging in here because I have no other choice.

[galvo]

Toasted sandwiches - Luxury!! Seriously though, I also hate everything about dialysis but, after being on for 8 months, I have reached a certain level of aceptance and I hope you do the same.

[MooseMom]

Des, have you given any thought to transplantation?  Is home hemo (NxStage) available in SA?  And lastly, is your dialysis effective enough?  Shouldn't you be feeling better than you do?  I know dialysis makes people feel tired, etc, but I also know that many people feel well enough to get on with their lives at a reasonable pace, so I have to wonder if how you feel today is really the best it is gonna get for you.

There is every reason to hate dialysis...don't blame you a bit.

[Sunny]

It's okay to feel this way Des from time to time.
Give yourself more time. Things will get better. Do the best you can to enjoy your children when you have the energy. Those days you don't have the energy, do your best to explain to them why. I notice my lack of energy more during the summer months when my children don't have school and my husband isn't teaching so they are around more. They have boundless energy and I don't want to do 1/2 the things they invite me to do so it just makes me notice my disability more. All you can do is your best to enjoy these summer months and long beautiful days to the best of your ability given the hand you've been dealt at this time. I hope there is some way to bring up the poor time management skills at your dialysis unit. It's not fair that they are often late putting you on which means maybe your whole schedule has to change because of it, which then effects time with your family.

[murf]

I have a quite simple philosophy about dialysis. This disease is not going to go away, so just get on with it. I know that everybody has there own mechanism to combat dialysis and perhaps the trick is to find what works for you. Having said that, there are times, it gets me down in the dumps. Then I find IHD a great catharsis. A place to purge my soul of inner demons to people who fully understand.

[brandi1leigh]

I hate that I "lost" my job. I hate it that I am too healthy to go on dissability but too sick to do anything else.   

This one really struck home with me...I am on disability, but feel guilty about it. I started dialysis in February and it has gotten a little better. Hang in there! I totally understand how you feel!!!

[cariad]

Des, you poor thing, your frustration comes through loud and clear. Did I read from you about 6 months ago that your doctors were estimating you could have a transplant off the list in July? Have they said anything further on this? All I can offer is a great big hug across the miles.

Toasted sandwiches - Luxury!!

You are such a scream, Galvo.

[RichardMEL]

yeah what's this about toasted sandwiches??? I'm hungry all of a sudden! 

We get untoasted sandwiches, and they are pretty poor,but better than nothing! The best part is the nice hot cup of tea that comes too. The lovely ward PSA who is a sweet and dear lady (and apparently an ex-flight attendant from the 70's!) makes just the best cuppa ever and she's so good to the patients - remembering the guy who hates tuna so gets him all salad sandwiches, or the other guy who hates chicken, and gives them little extras when she can. You know it's little things like that that make dialysis much better for me.

Anyway that's a bit OT.

Des, rant away!! This is what it is like for a lot of us and trust me we understand. I like murf's response though. I the end we just have to put up with it, make the most of it and get on with it until something better comes along.

[RightSide]

I have a quite simple philosophy about dialysis. This disease is not going to go away, so just get on with it.

I have an even simpler philosophy about dialysis:

It sure beats death.

[Des]

Thank you all so much for the replies...
We don't have nxstage here in SA and PD is not an option and my transplant is years away now as my donor opted out in Jan. Acceptance will come but I will still hate this disease.

The toasted samies is ok but that is my supper and not a snack because I get home at 9h30pm and cannot eat that late.

I do feel ok(better) than without dialysis but I don't want this disease at all....... I still think it is just a raw deal we are dealt with.

Don't get me wrong : giving up is not in my vocabularly (only this once- here  ) so I know I will grin and bear it but I needed to tell someone how I really feel.

So..... I will be here ranting away for sometime to come.

[KICKSTART]

Hi you ! yeah yeah yeah i can say all the right words ..but you know me ! Why should you like it ? why should you accept it ? In the 7 years ive been doing it im still p****d off with it ! . Oh its better than death ..some days maybe , but prisoners , mass-murderers, robbers, rapists,all get more enjoyment out of life (its the best way i can think to put it) should i say ,have no food/drink restrictions ..no sitting in that sodding chair day after day ..anyway you know what i mean. Im never going to get a transplant so this is my life . Maybe you will be like me and never accept it .im not that gracious as those on here who say they do and are grateful. Im not grateful ..here if someone else wants this disease then take it and you can be grateful. So Des dont think you are the only one here that is angry, im right along side there with you ! Now lets go cause some mischief ..what the hell ! 

[MooseMom]

When I was being "interviewed" at my transplant eval, the social worker said that people in my position experience all of the stages of grief, and many of them get stuck on "anger".  I told her I was one of those people.  Anger, fury...like you, I have yet to accept this with grace and I don't think I will ever reach that point.  I'm mad now, and I'm not even on D yet, so imagine my incandescence once I DO start.  Being angry doesn't mean you cannot "accept" what has happened.  You've accepted it as well as you can because you at least GO to dialysis...that's "acceptance" in my book.  We should grab KICKSTART and go set fire to something...

[peleroja]

I agree with what everyone else said, and also wonder about PD.  Once you get on the cycler and have Extraneal as your final dwell, you have your entire day free.  We're here for you any time you want to vent!

[KICKSTART]

When I was being "interviewed" at my transplant eval, the social worker said that people in my position experience all of the stages of grief, and many of them get stuck on "anger".  I told her I was one of those people.  Anger, fury...like you, I have yet to accept this with grace and I don't think I will ever reach that point.  I'm mad now, and I'm not even on D yet, so imagine my incandescence once I DO start.  Being angry doesn't mean you cannot "accept" what has happened.  You've accepted it as well as you can because you at least GO to dialysis...that's "acceptance" in my book.  We should grab KICKSTART and go set fire to something...

   I got the matches !

[brandi1leigh]

I'm not sure I really understood how angry I was until I heard/read someone else expressing how I feel. In my life outside of kidney disease, I'm pretty easy going. I rarely lose my temper, so I'm not sure I recognized my anger for the rage that it is. I have great friends and a great family, but  I don't want to be debbie downer all the time, so I don't always express how miserable I am or how unfair I think my fate is.

I can't express how helpful it is just to se that other people feel the same way I do! Thanks.

[tyefly]

Des..... You said  it.....   and I agree.......  I am missing camping too...... stay strong.......We all understand and feel your pain...... 

[Des]

I will bring a flame thrower!!!!!!


 

At least we are all in this sinking boat together.

Kikstart - don't rock the boat when you are in it. 

Thanks for understanding.

Lovies

[Treasure]

Bring the matches...bring the flamethrower...

After six years of this I'm still angry enough to start a flame by rubbing my cheeks together. hehehe.

Except for the nights on nocturnal, because everything is so stiff from sitting I can only manage a little puff.

Hang in there, Des...we're here for you!

I will bring a flame thrower!!!!!!


 

At least we are all in this sinking boat together.

Kikstart - don't rock the boat when you are in it. 

Thanks for understanding.

Lovies

[billybags]

Hi Des I read you load and clear and I can see where you are coming from. I am not the patient I am the carer and I hate what it is doing to us.
I hate setting the machine up at night knowing my husband is going to be plugged in all night.
I hate waiting for the nurse to come,
 I hate having deliveries that take up an entire room
I hate it because it stops us doing things we used to
I hate having to remind him about appointment's
I hate frigging hospitals
I fuc**** hate every thing about it.
To-day I am in a pis**ed off mood. Kickstart lets do it.

[Ken Shelmerdine]

Lets blow up the air conditioning units at the clinics 'cause its always too bloody cold! (Moderators can we have an arsonist symbol?)