Overwhelmed and no relief in sight

[devon]

I know you all have dealt with this at some point so I'm looking for some input here...

Yesterday it hit me like a ton of bricks.  I am spending three days of week, more time than a hobby, sitting on my ass for 4 hours while a machine does the work of a failed major organ.  I'm not feeling "better".  I'm just surviving.  It seems so very senseless.  If it wasn't for my kid needing me, I wouldn't do this and I would gladly accept my fate without the mechanical intervention. 

Hell, I can't even form a good question about this because it's all so overwhelming.  I'm not even sure what the questions are or might be!  I feel like I'm swimming upsteam, not making any progress and getting more tired the more I swim!   

I keep looking for the "silver lining" in my dark cloud but it seems to elude my best efforts. 

So, perhaps y'all have some insight into this that I'm not seeing.  What's the "secret" to your success?  How do you deal with this?  What's your silver lining?  Where do you go in your thoughts to find the inspiration to keep swimming?

If I could cry I would.

-Devon

[willieandwinnie]

Oh devon  . Everyone on this site has been where you are and with what you are feeling. I am the caregiver and it was so hard for me to watch Len go through everything he did for almost 8 years. I cried many times when he said he had enough of it. I told him how much I love him and need him everyday, I'm sure that's how your family feels. I took Len to talk to a professional counselor and it did seem to help. Many people that go through critical health issues need to be able to express their concerns to someone. Keep your family in mind when you start feeling down and I'll pray that you find the "silver lining" that your looking for. We are all here for you when you need to get stuff off your chest. 

[flip]

Remember, Devon, you're still a newbie to dialysis. It takes a little while to adjust. My first month not very pleasant either. Now it's almost like a social event three times a week. I know everyone and I take plenty of things to keep me busy. I feel good when I go in and just as good when I leave. You have to accept it as a part of your life and make the best of it. We're all here for you and we will help you tweak the process. It's really not that hard.

[Joe Paul]

Ill tell you, if it wasn't for my daughter id do the same. I feel as though I am holding my wife back from a normal relationship, with a healthy guy, she deserves that.  Right now, beside the fact I want to see my daughter succeed, is the hope for a transplant. That way at least I have a chance to be "normal"again, and be able to do some of the things I did before my kidneys failed.  Once they get you figured out, you will start feeling better, it takes time. It took me about 3-4 months before I started to feel any different, even now, after over 2 1/2 years of dialysis, I have good days and bad, thank God the better are more than bad, but there are times still when I wonder if its really worth it. Those on home hemo seem to do lots better, I did try PD but it did not work for me, another let down. Home hemo is not available at my center, and to change doctors now, and go to a doctor that does believe in home hemo, its just too many hoops to jump through. As I said, my hope is for a transplant & a chance to live "normal" again. You are not alone with those feelings Devon, this life style is overwhelming at times, but someday it will get better, for both of us. Keep on keeping on, it will be worth it one of these days, give it time  

[Rerun]

Well, I don't have kids or a spouse to keep me going.  What keeps me going is knowing I can quit anytime I want to.  The fact that I'm in control (most of the time) helps me go on one more day. 

The life I had with my transplant was so much better than this.  The thought of that and now my social life is the dialysis clinic makes me sick.  I refuse to make dialysis my life.  This is not what I wanted out of life but I do it for now.

This site is the best place to go vent because you family and friends don't want to hear it.

The realization that you are on dialysis 3 times a week for 4 hours for the rest of your days is like a ton of bricks!!  You learn to deal with it.

Now I feel that I spend about the same time someone normal spends in the bathroom peeing.  I just get'er done at one shot.

[G-Ma]

Devon...I am so sorry you are having a down period..this too shall change..I don't know about getting better but how you look at it will change.  I am using NxStage and feel so much better healthwise and emotionally..I feel more in control of my situation even though there are still days I would rather run away, however if I run away I would have to take my 75 pound buddy with me, and some bags.  But knowing it is an option helps me.  There are days I do cry at the drop of a hat, part of that is just me, part of that is this stupid disease.  Please keep on coming here and ranting/raving as this also helps. Yes, I used to sew at least 4 hours a day so I had to shift my priorities/hobbies but seeing my kids and grandkids happy about my health makes it all worthwhile.  I'm sending a hug your way.
Ann   

[Orange County Ca]

Life is good as your signature says.

Sounds like you're in a depressed period, and who hasn't been in this business.  Taking a pill for that is nothng to be ashamed of.  But first:

Take a look at others around at dialysis and realize that there are others much worse off.

I took the attitude that it was a job, more than a hobby, a job.  I may not like my job.  I may even get sick on or because of the job.  But none-the-less there it was and I had to do it.  By doing it I claimed at least 4 days a week I could do with what I wanted.

If I took a trip I went for twice as long as others woujld so I coujld have the same number of days free.  A one week trip became two weeks.

You are perceiving your life as half wasted when in fact its just the opposite.  Half your life is being saved.  Go use it.

[paris]

Devon, I think depression is one of the biggest things to cope with in ESRD.  Is is not possible to put on a happy face all the time.   I know others have things worse than I do. I saw my SIL die last year.  I am still alive.  But, I think we have the right to mourn the loss of a major organ failing.  I go through waves.  Some weeks/months I am so optimistic and can conquere the world.  I know things are going to get worse before they get better.  If I think too far ahead, I get down.    So, come here and talk to us.  We don't have all the answers, but we will listen.  I think it is normal to be overwhelmed by organ failure. No one knows until they are faced with it.   But, you can do this.   Just live today, then get up again tomorrow.  We are here anytime you need a place to scream.  You are among friends who understand.   

[peleroja]

I don't know if this will help, but if you have the option, I found my life got a whole lot better when I switched from hemo to PD.  Not only did I seem to have more strength, but I travel constantly (going on a cruise to Hawaii in November and to Mexico next spring).  Other than needing one wall somewhere in your apartment or house for your dialysate, it's a real boon.  Check if out if you can.  Although it's still dialysis, it's a much more free form of dialysis.  In the meantime, I'm sending lots of warm fuzzies your way. 

[devon]

I changed my signature.  Perhaps it's more accurate now.

I have always been an optmist and this is the first itme in my life that I can't seem to grasp onto that feeling and pull myself out.

I guess I am grieving.  I look forward to being on the other side of that mood, moving to Acceptance.

Thanks all for the encouragement.  Yes, I will persevere.  One day at a time.  This too shall ass.  And all that.

-Devon

[okarol]

  devon - hang in there

[monrein]

It's hard, really emotionally hard, when we get into these very understandable troughs.  And if you're generally an optimistic person, as you say you are and as I am too, I think it's even harder but the truth is we all struggle ongoingly and some periods are OK, some are good and some just simply suck.

Devon I think that you may need to really give yourself permission to grieve this huge loss in your life, to moan and rant and complain about all the big and tiny things that are now changed.  Once you are better dialyzed and your body (and mind) get more used to the whole thing you may start to feel optimistic again, at least some of the time.  I found dialysis very tough at the beginning but did adapt once I knew better what to expect and also when it helped me feel better. 

Come here any time you need to get things off your chest and you know that we'll always have big hugs for you. 

[twirl]

I felt the same exact way
now I am more upset b/c I could not manage to keep my teaching job and go to dialysis
I felt the same way until I thought about this
my sister-in-law fell down and broke her neck
she is 24/7 in bed and can barely move at all
I am on the machine 12 hours and then some b/c of the holding time
not much out of my life when you compare it to my sister-in-law
I can drive, swim, go to football games and do some normal things
so
I know this is a hard life
my step-mother said," it is a hell of a way to have to live"
the key word is live
if you get to down in the dumps talk to Flip
he has an encouraging outlook on life and D
it will become more familiar and you get used to it
you don't like it but you get used to it
Twirl

[carla13]

Devon,

I'm so sorry to hear that you are feeling this way. Youare not alone. We all have periods when everything seems hopeless or pointless. It will pass. It may take some time, and it may get worse before it gets better, but remember there are people here who will always reply to your messages, however down youare. I have posted on here when I've felt aggrieved or depressed or angry and there is always someone here with a soothing word, or encouragement, or information,  or just the acceptance that we all feel utterly desolate at times.

Just writing your feelings down can make you feel better, I've said before that I don't care if no-one reads a particular posting of mine I just needed to write it down!

Keep posting, especially when you feel depressed, and there'll always be a comrade somewhere around the globe who'll empathise.

xx
carla
xx

[thegrammalady]

it's a lot to handle, we've all been there.

[Lori1851]

Devon,
I can't say I know what your feeling but you had read many post when my son was alive (Dustin). There were days( many of them) where he wanted to give up, call it quits. I, as the persistent  mom I was kept telling him to take one day at a time and reminded him of how much I loved him. I wish you lived closer I would come visit you. I wish I could take kidney disease from all of you. All of you helped me so much through Dustin's illness. All of you are so important not just to family but also to friends here online. When you have a bad day Devon please remember it was your replies to my posts along with a lot of others on here that helped me keep my sanity!
I will pray your days become better and you find that silver lining .

Lori/Indiana

[kitkatz]

There are days when it all gets to me.  Then there are days when the miracle of being alive gets to me, too.  Some days you just have to put your head down and pray you will get through it all.

Support and prayers are headed your way. 

[Mr.N]

I'm not going to blow smoke up your ass Devon. I've dealt with crap for 2 yrs and it's  as bad as day 1. I have relatives and friends "praying" for me, etc., but my faith is non-existent at this point. Let them do what makes them feel better.... What's got me through the shifting cycles of suicidal and homicidal thoughts is defiance to give in to my condition. I tend to be an ass**** most times and that's kept me going. I defy the conditions (i.e. "God") presented to me and challenge them to do me in. Having a degree in Biology helps me accept that this is all the process of Natural Selection, and I've been "selected" for extinction. If we had this disease 50 yrs ago, we'd all be dead by now. But in contrast, the advances of science of medicine are keeping us alive right now, so I'm going to take full advantage in this aspect of human knowledge. If I have faith in anything, it's in the further advancements of medicine, stem-cell research and cloning. Perhaps within our lifetimes diseases like the ones we're experiencing can be cured by growing our own genetically replaceable organs. Most likely it won't happen, but by studying and working with patients like us, doctors may achieve these results within the lifetimes of your children. All I can say is take it day by day and minute by minute, and stick around for the important things in your life, even if they're few. But these are just the opinions of one ass****.

[Robby712]

Having to rely on a machine to keep you alive is about as depressing as it gets.  Especially if you were an independent person in the first place.

Everybody that ends up on Dialysis feels this way at one point or another.  It comes and goes.  I won't lie, it took me two years to really accept my condition.  I kept thinking I was going to get better.  Once I realized that this was the life I was destined to live...that these were the parameters I must follow, giving up 3 nights a week until transplant, fluid and food restrictions, etc...Once I finally admitted to myself this is the way things are, and this is the way they are going to stay for the foreseeable future...I actually felt better.

It still comes and goes...but far less often than it used to.

I know this sounds kind of terrible...but all I have to do is look around the room on MWF to gain some perspective.  No diabetes, still working full time, no real health problems other than the ESRD.  There are people that are at the very end of there lives there, diabetes patients missing toes, feet, entire limbs.   People my age (30) too sick to work.  Either from the ESRD or other health problems.  People so overweight that they can't get up out of the recliner on their own.

I consider myself relatively lucky.

Then there is the hope of transplant.  Get on the list.  Or maybe there will be better options in the near future.  Some sort of research that leads to steroid-free transplant, or perhaps one day we'll have the ability to grow organs in labs using stem cells or our own DNA.  Or even dialysis that takes less time.  Or a small transplantable artificial kidney.  Last month I was told that the problems I have with anti-bodies, the problems that have kept me from being transplantable the past 4 1/2 years, have been treated successfully in 16 of 20 patients that underwent a experimental procedure.  I might be able to undergo that same procedure this spring.

You grab onto hope wherever you can find it.  Then hold on.

Then there are other things.  I feel like I contribute to my community as a teacher.  I think about all the traveling I'll do post-transplant.  Man I miss that.  I think about the first 6 pack I'll down again on a summer night...not worrying about fluid limits or phosporus.

I think about how much more I'll appreciate life post-transplant.  How I won't take it for granted.  And how in a way, I already appreciate it more now than I ever did.

More than anything, I think about how if I can make it through this.  I can make it through anything.

[dkerr]

Wow ...Devon I'm so sorry your have a dark time.  I'm not even on dialysis yet (though not far behind you) and I have dark times also.  Between God, my family, friends,  and Zoloft, I hold together.  Hang on ... even if by the proverbial end of the rope.  I'm a big believer that all of these hard experiences in life make us stronger and better than we were. At least in me they have - and there have been many trials in my life and in those I see.  This just happens to be mine for now.  I am a believer in God and I firmly believe he is aware of us and knows us one by one.  I also believe when we weep, he weeps with us.  I'll remember you in my prayers.

[devon]

Thanks again y'all.   You really came through for me.  I really appreciate it.

I am "better" today.  Last night's session was pretty uneventful and the doc came by so I had a chance to talk to him.  The result is that I get to spend an additional fifteen minute in dialysis!  I really have to laugh.  But, the good news is that my fistula is getting stronger and they can increase the flow rate a bit which, gradually, will increase the effectiveness of the dialysis and, hopefully, I will feel some benefit.  That might contribute to a better mood on my part.

Permission to grieve and feel sorry for myself.  That is really important.  That's a revelation I came to last night and a comment here from monrein supports that.  I've not been very good at acceptance.  I usually get angry and fight back like a banshee.  It embarrasses my son but I usually get results.  I don't accept things as they are if they don't suit me.  In this case, acceptance seems to be the only option available.  

But, on the other hand, I don't want to join the "living dead" that I see in the clinic chairs around me.  No offense intended, of course, but if that is acceptance, I don't like it.   There's no conversation, no animation, no life.  It's like they go into suspended animation, comatose, for hours a day while their life is sucked into a machine, devoured, and the leftovers spit back into their veins.  It's as if their life is being taken away, not given back.  I don't want to spend a large chunk of my life staring blindly at a TV and not acknowledging the people around me.   Last night a thin, elderly woman rolled past me to the solitude of her chair and said, "you have a beautiful smile".  I was on the edge of tears as I burbled out, "thanks".  We never spoke another word to each other.  That's unacceptable!

I looked around last night (like you Robby712) and I felt a bit fortunate.  I am able to drive there (like you Twirl) and get around. I am able to work my 40 hours a week. I have no wheelchair, no missing limbs, no thin, gaunt expression.  I'm very fortunate.  It's all relative I guess.  Sometimes I have to desperately seek out something to grasp onto into hope and optimism because it's not coming as easily as it has in the past.

One other time in my life, I had to deal with significant tragedy.  I suffered for 35 years before I discovered that this event was intended to prepare me for a very blessed event that took all the pain away.  Without that tragedy, I would not have been able to deal with the other.  I hope there's a good side to this experience with dialysis, that it will be the basis for another blessing in my life.  I sure as heck can't wait 35 years this time though!  So, please, Fates, hurry things along this time.

Thanks again y'all for your patience, compassion, and understanding.  I'm glad to be a part of this group but sorry we have to be associated in this way.  I'm sorry for what's brought us together but pleased we have each other.  Yes, I will get through this but I'm sure I can't do this alone.  For the first time in my life, I can't do it myself.  I need others and I need you.  That's hard for me to admit. Very hard.  Maybe that's the lesson I have to learn: I can't do everything for myself and I need others, that life is not what we live but a network of people helping people, needing other people.... Jeez I sound like Barbara Streisand!

Love ya,

-Devon

[Vlynn]

I think life in general can make you feel overwhelmed, tired, and just treading water and well to add into the mix a failing kidney can just heighten all those feelings. You are going to have your ups and downs but keep positive!!! Focus on things that want to make you live!  you can do it just stay tough!!!

[thegrammalady]

glad you're feeling a bit better. don't wait for others to talk to you, start talking to them. i bet they respond in a positive way. my center seemed unfriendly at first, but really isn't and patients talking together is power. hang in there and remember we are always here.

[okarol]

  Barbara Streisand

[monrein]

I talk to ALL the patients at my clinic.  We are all nice people from very different walks of life but what we have in common is so much more than the differences in skin colour, religion, country of origin and first language.  One of my good buddies is from Sri Lanka and does upholstery piece work for a living.  What a courageous and lovely man and we have much fun teasing each other.  We all greet one another when we come in and when we leave and we worry about each other too.  Kind of like IHD.

So happy to hear you feel a little better Barbara, er uhm I mean Devon.