Breaking down slowly but surely

[CW]

Started over 15 years ago ... Tired, constantly stressing and dont know what to do anymore.

[boswife]

Makes me sad..  This is happening all around me.  Including me, as my dear loves partner    I wish us all strength..

[MooseMom]

Such a long time to have lived this way.  I hope you find some wellspring of strength to keep you going.

[cdwbrooklyn]

CW, I do understand how you feel.  There are days I feel the same way as I’ve been doing this for 14 years now.  However, I tell myself that I am functioning like everyone else but have to take extra steps.  You have to believe that things will get better.  It’s good to have something going for yourself.  Think of things you like to do and do them.  Look at movies and be around friends and family that make you laugh.  Go out every chance you get.  Get involve with something you enjoy doing.  If you can get up every morning looking forward to something you want to do, it will take you mind off D.  Personally, I use D to sleep.  I get on the machine anywhere between 10 pm -12am and sleep while on it half the night.  It helps my days to become longer and now I have time to do what I want to do after work.  Yes, I’m a little tired sometimes but it’s not that bad and all I have to do is walk it off.  I am involved with so many things that I look forward to do D so I can get ready for the next day.  I’ve set a schedule for myself so my body knows when to get tired.  I go on the machine on Sundays, Mondays, Tuesdays, Thursdays, and Fridays.  I have Wednesdays and Saturdays off.    I find this schedule works best for me.  I look forward for my weekends and my Wednesdays off.    Anyhoo, my point is please don’t give up.  Keep pushing on because their so much outside of you waiting to greet your presents.   Anytime, you feel down like giving up, find someone to talk to that will make you laugh or watch a movie that will make you laugh.   

Hope this helps as I don’t want to see anymore people letting go.   

[Bill Peckham]

In 2010 after 20 years using dialysis I was feeling run down and noticing physical deficits more and more - at the time my grip strength had deteriorated to the point of not being able to grip a bowling ball.. I took a new job working on my feet and using my hands wondering if I would be able to do it and looking back I have to say the job has reversed the decline.

My grip strength has mostly returned - I have trigger finger in my right hand still but that continues to slowly improve too.

CW what specific things are breaking down? I'm wondering if you and everyone else feeling they're in decline, are exercising and how often?

[geoffcamp]

Yea I feel for you. I'm around that point too after a little more than 10 years on dialysis. Hopefully you will find some strength.

[Riki]

I sat here and figured it out, and since 1991, I've spent 10 years and 5 months on dialysis.  There's been a lot of ups and downs, some great highs and some really nasty lows.  I think it's normal to feel like everything is coming apart at the seams sometimes.  The thing is to try to hold it together until things get better, and if you're having trouble with that, there's nothing wrong with asking for help, either from family and friends, or from professionals.  It happens to us all, we just have to get through it in our own ways.

[ChrisEtc]

I've been doing it for two years and I'm exhausted.  Can't imagine ten plus years.

[CW]

Thanks for the well wishes boswife and moosemom

Cdw brooklyn thanks for the advice

Peck first off we all know you are actually superman and have no physical deficits... Lol but seriously I have been dealing with physical issues from the beginning and my tolerance for physical problems is not my issue... I can feel my coping ability slipping away. Which is making me feel like I do not want to do this anymore.

Geoff stay strong thx for the well wishes

Riki you are right and even as proud and independent as I am I have asked for help and it has never helped! And I am referring to professionals

Chrisetc it has been challenging all throughout and I sincerely hope you find a therapy (hemo, pd, tx) that you can see yourself doing far longer than my measly 15 years, stay strong!

Thx to you all for taking the time to respond

[MooseMom]

CW, I went back and read many of your earliest posts, including your very first one from back in 2008.  You sounded so positive and so eager to share information and to be supportive.  And then came your most recent thread where you were thinking about stopping D, and your exhaustion and frustration were palpable.

On a side note, ushering your child into adulthood doesn't mean you are no longer a parent.  It's just that your child's needs change.  You need to be around to usher your child into parenthood!

I don't know what cdwbrooklyn is taking, but I want a gallon of it.  Her optimism and demand for joy is monumentally impressive.  She is a great person to invite to anyone's pity party.  I've hosted many of those! I don't know where she finds the strength and energy to keep frustration and depression at bay.

It is constant battle to keep hope alive, and frankly, if you are tired and ill, finding hope is so difficult.  Fighting and fighting and fighting becomes such a drain.  It takes real energy to just cope.  People talk about fighting ESRD or fighting cancer, but no, it's not fighting the disease so much as it is fighting depression and frustration, terror and fear.  And the more exhaustion sets in, the easier it is to let your coping ability slip away.

Did some one thing in particular start this downward slide?

Who the hell would want to be on dialysis for 15 years?  This would test anyone's coping ability!  Geez, I'm not surprised you feel like you don't want to do this anymore!  I don't think you see anyone who has EVER felt, "I've been on D for 15 years, and it has been just so marvelous that I can't wait for the next 15!"

I'd take (and have taken, for myself) cdwb's advice; try to find one thing each day that brings you some joy.  I know all too well that that is easier said than done, but it is a skill that has to be practiced.  One day at a time.  The one thing that I have found that has helped me is just getting outside and going for a walk.  I've been doing some gardening today, and it's amazing to see all of the little bits of green that are sprouting, telling me that spring really is here.

 

[boswife]

I have to say that i can only imagine how hard it is for the 'patient' here.  I, the wife 'of', can feel so defeated, so down, so much in pain from watching and helping my love go through this and i have/*had*    my health to help me through.  As i begin to break down in heart, stress, worry, and lack of sleep as i watch over him, i think i see how the patients 'will" can fail them.  It's so much harder when the illness, or weariness has it's grip on you.. Curses to the down side    , and i pray that an upswing, and more positive thinking will come back  to those who are in need of it bout this time     I thank you all, for such beautiful insite to your hearts, and ways of 'dealing'.  this place is a true life saver, life helper and giver     to ya all 

[CW]

CW, I went back and read many of your earliest posts, including your very first one from back in 2008.  You sounded so positive and so eager to share information and to be supportive.  And then came your most recent thread where you were thinking about stopping D, and your exhaustion and frustration were palpable.

On a side note, ushering your child into adulthood doesn't mean you are no longer a parent.  It's just that your child's needs change.  You need to be around to usher your child into parenthood!

I don't know what cdwbrooklyn is taking, but I want a gallon of it.  Her optimism and demand for joy is monumentally impressive.  She is a great person to invite to anyone's pity party.  I've hosted many of those! I don't know where she finds the strength and energy to keep frustration and depression at bay.

It is constant battle to keep hope alive, and frankly, if you are tired and ill, finding hope is so difficult.  Fighting and fighting and fighting becomes such a drain.  It takes real energy to just cope.  People talk about fighting ESRD or fighting cancer, but no, it's not fighting the disease so much as it is fighting depression and frustration, terror and fear.  And the more exhaustion sets in, the easier it is to let your coping ability slip away.

Did some one thing in particular start this downward slide?

Who the hell would want to be on dialysis for 15 years?  This would test anyone's coping ability!  Geez, I'm not surprised you feel like you don't want to do this anymore!  I don't think you see anyone who has EVER felt, "I've been on D for 15 years, and it has been just so marvelous that I can't wait for the next 15!"

I'd take (and have taken, for myself) cdwb's advice; try to find one thing each day that brings you some joy.  I know all too well that that is easier said than done, but it is a skill that has to be practiced.  One day at a time.  The one thing that I have found that has helped me is just getting outside and going for a walk.  I've been doing some gardening today, and it's amazing to see all of the little bits of green that are sprouting, telling me that spring really is here.

 

You are right moosemom I have always strived to support other patients and for a long time I had coping down to a science. I consider myself a person that can acheive anything I choose and I still believe it, but I feel like I have exhausted the mental energy that kept me going.

I know that the job of a parent is never done and my silly, smart, intelligent sweet daughter is the only reason I did not quit long ago. I dont want to have to leave her dadless but I am tired. I am not sure what I will do. I will always strive to succeed and do all I can for family, friends, patients and community.

Thank you kindly for your time your words have helped

And boswife we are able to endure because of people like you, whether they be loved ones or medical/social work staff or other patients the support we get from others is a major factor in our ability to cope.

[MooseMom]

Of course you are exhausted, so you are not in the proper state of mind to make such a decision as stopping dialysis.  Whichever decision you make will have a lasting effect upon your beautiful daughter.  While this is a decision that is yours, and yours alone, to make, could you at least speak to her first?  Perhaps she could give you the energy you need to keep going.

[ragonsalves]

CW, I'm a newbie, and pre dialysis, so i cant say i know what you are going trough, but please know, you and everyone else on here, are inspirations for newbies like me. you take allot of the fear of the unknown out of things for me, and I'm sure a lot of others. before i found this site i was terrified at what was coming for me, but after reading so many thoughts and opinions from this site, i felt more at ease... i can make this...this isn't the end. just being here and posting is such a huge help to so many. i sincerely hope you can pull out of this, and continue to help others, like me. and by the way, thanks for your help. it means allot.

[WishIKnew]

CW, i hear you.  I hope, like the others have said, that you find a new energy, something to pull you up and out.  The big D is so hard, both mentally and physically.  Thinking of you.

Diane

[CW]

Thx to all for your input i have read an appreciate every word!

Your kidney brother
CW