Dialysis and depression ?

[kristina]

During my dialysis-session last night I suddenly had an overwhelming bout of depression:
I realized that from now on I am irreversibly connected to artificial treatment to keep alive because my kidneys finally gave up.
Suddenly I experienced a very deep depression of a sort I had never experienced before and it almost paralyzed my mind
with a constant deep fear and hopelessness.
I also realized at the same time that from now on I was dependent on artificial treatment because of my kidney failure
and without this artificial treatment I would be dead and buried by now...
The novelty – so to speak – has worn off...
After forty dialysis-sessions I am not a “dialysis-newbie” any longer
and I am experiencing the accumulative effects of a few unpleasant side-effects
(for example UV-photosensitivity to the strong artificial lighting in the centre, giving me constant headaches,
tiredness and a sign pointing to a possible gastrointestinal-problem as yet of unidentifiable cause)
... and the knowledge that this dialysis is totally inflexible
and I am stuck in a rigid regime of three sessions a week without any break from now on...
Whilst my logical mind tells me that dialysis is a wonderful invention which allows me to live on,
at the same time I cannot ward-off the psychological effects of the downside of my predicament.
This is something new to me because I have always been very positive and optimistic
and for these new thoughts to have crept in makes me feel very uneasy.
A transplant may be on the horizon but that too has problems associated with it
not only for myself but also for my husband who is donating a kidney to give me a better life.
I write this because I wonder whether this is a common stage dialysis patients struggle through or constantly struggle with?
Thanks from Kristina.

[Michael Murphy]

Kristina if you look at a never ending line of dialysis treatment it could depress a saint.  I survive by going one week at a time.  Every Friday I celebrate that I am done for the week and often announce I won't be back this week.  It's stupid but it seems to work.  I know on Friday I have the weekend off and I enjoy those days off.  It also helps to know this is not the only endless activity we  engage in. I worked  for 45 years every day of the week Monday thru Friday with very few  interruptions.  Dialysis is just another job we do.   I still look forward to the weekend.  Most people do 9 to 15 hours of dialysis that leaves over 150 hours of non dialysis time each week.  Focus on that time.  Without dialysis it's over. Life can still be enjoyed. Look at the guy who while on dialysis took his Nexstage system down the Grand Canyon on a rafting trip.  Where the is life there is fun still to be had.

[kristina]

Thank you very much Michael for sharing with me your experiences !
I very much appreciate your honesty !
... Your thoughts give me a lot to think about and to work it out in my own mind.
... At the moment I am still very much “in it” but I try very hard to find a way “out of it”. 
I thank you very much for sharing with me your thoughts about this
and it already helps me to realize that I am not alone with these thoughts...
Thanks again from Kristina.

[Charlie B53]

Episodes of depression among dialysis patients and their caregivers are not UN-expected.  No 'normal' person would subject themselves to dialysis.  Never.

The fact that dialysis does maintain our lives IS immense.  And we need to focus on the good, and that is all the other things, people, experiences we will yet have because this dialysis thing is managing our disease and allowing us to continue.  Try to focus on the reason you are thankful, for your life, family, friends, plans, upcoming events, all the things that make your life worth so much.

You are NOT alone.  Every one of us has had, and will continue to have times of depression.  Share it, act on it, hopefully that will allow you to get past it a little quicker this time.  Do not dwell on it so much when it begins another time.  This too will pass, making you stronger again.

[kristina]

Thank you Charlie,
You have certainly summed it all up and explained this new experience very well !
... And hopefully it won't "hit" me that badly again in the future ...
It is true, there are so many things that make life well worth living...
I very much appreciate my husband's support and his understanding
and I still have my favourite baroque-music and my piano still sounds very inspiring...
There are so many plans and ideas to look forward to in the future
and I thank you very much for reminding me ...
Thanks again from Kristina.

[MooseMom]

My mom was on dialysis for 5 years.  One day we were in California for a bit of a family reunion, and one aunt pulled me aside and whispered, "I think your mother might have some depression."  I replied, "Well, of course she does!  She's on dialysis!"  I was surprised that my aunt was surprised.

As you know, just the idea of having to go on dialysis depressed me no end.  I got a transplant before I had to go on D, but there are absolutely no guarantees that I won't end up in that chair one day.  I will be the first to admit that seeing the glass half full is not in my nature.  Seeing the glass as being half empty and getting emptier as a result of evaporation is more my mindset.  So reminding myself of the good things in life would entail a lot of work.  I am the last person to give advice in this regard.

But I can certainly see that what Michael and Charlie have said to you is true.  You have a life filled with wonderful things, and dialysis has not taken away any of them.  It may have given you less time to enjoy them, but they are still there.

 

[cattlekid]

Hello Kristina,

I have been there myself.  When I was working full-time and doing in-center dialysis, it was a situation that I found untenable.  Even though I was actively working towards a transplant, the treadmill of work and dialysis was becoming too much to bear, especially with the after-effects of the harsh in-center treatments.

For me, I had to get out of the center.  It just was not someplace I could be any more.  Through this message board, I found out about home hemodialysis.  Home hemodialysis saved my sanity. 

I realize that home hemodialysis is not available everywhere and does not suit everyone.  Therefore, my suggestion is to find a specific activity to focus on every week.  For me, it was Sunday.  It was the one day per week that I did not dialyze or work.  I would always try to find something special to do on that Sunday so that I did not spend the day doing chores or other busy-work.  There were often times that I would forgo events to which I had been invited because they were on my precious Sundays and the event would be more draining than energizing.  It sounds like you have this in your piano and your music.  I would highly suggest that you carve out time for this every week regardless of what else is going on in your life to help keep you going from treatment to treatment.

-cattlekid   

[kristina]

Thank you MooseMom and cattlekid.
It is very true what you say and I must try not to let things get out of hand...
I shall now try to concentrate on positive matters to get a "right balance" back into my life ...
... It is so good to be able and come here and "pour it all out" when the strict rigours of dialysis start biting...
... During my short "honeymoon" after starting with dialysis I was at first very happy to survive
and instead of dying I had started with "my" dialysis-treatment ...
But then I suddenly began to realize my grim situation about all the strict rigours of "three times a week" without a break
and as a result it became difficult for me, to make sure that these "three times a week" would not get a chance to take over my life ...
...Perhaps the key to it all is to search for the right balance...
Thanks again from Kristina.

[Dannyboy]

Kristina,  Oh yeah, I've been there too.   

I really sunk low thinking and agonizing about all the stuff I used to be able to do (backpacking, climbing, travelling, etc) that are mostly out of the question now.  I *was* a very active volunteer with the local Sheriff's Search and Rescue team, heading out on a moment's notice for hours or sometimes days in the field, in all sorts of weather etc.   All gone I kept thinking.... I spiralled down pretty low, focusing on all the many things I can no longer do, or hardly ever do anyway or only with extra planning. 

No surprise here to anyone on Dialysis I'm sure.  We all greatly miss aspects of life that are difficult/not possible to do, considering the need for frequent D.

And then I realized (with help) that I needed to focus on "what i CAN do".  Which, in the great scheme of things is a lot.  Sure I miss stuff I used to be able to do, but I am trying to recognize that where I am at now is the way things are, like it or not.     It is often said that adversity (if it doesn't kill you anyway) makes a person stronger.   Well I am much stronger in some ways than pre-D.   

Frankly I still slide now and then.  But I try hard to remember the "think of what you CAN do" thing.

My two cents.

[kristina]

Thank you for your kind explanation Danny ...
... I am still going through the stage you have so kindly shared and I am beginning to notice
that despite dialysis and the headaches it causes me, I might still be able do a few things...
... But I still have to go a long way to accept the precision of "dialysis three times every week",
always at the same time at the same place and without any fail...
Thanks again from Kristina.

[kristina]

... This reminds me of a poem by Hugo von Hoffmansthal (1874 - 1929) :
While some, it is true, have to be down there where the heavy oars of the galleys scour,
others live aloft by the helm, know the flight of birds and the countries of the stars...
... some will always lie with heavy limps close to the roots of tangled life,
while for others seats are set with the sibyls, the queens and they sit there as though they were at home,
graceful of head and graceful handed...
But a shadow falls from those lives across into the other lives
and the light ones are bound to the heavy ones as much as to air and earth:
I cannot put off from my eyelids the weariness of totally forgotten peoples
nor can I ward off from my terrified soul the silent fall-out of distant stars...

[skinnacat]

hi kristina...i think i started dialysis about the same time u did and even months later i still feel
very over whelmed with all this dialysis stuff. i guess i have some good days and some bad but
so many people dont understand how serious it all is and sometimes i struggle with the not knowing.
i am on pd dialysis and i do think its better for me right now than hemo but let me just say i feel like
it consumes my life sometimes mostly because i have to do it 4 times a day everyday. but i try to stay
positive as much as i can but its not easy and coming here and being able to talk to alll of u has helped
me so very much!

[kitkatz]

The feelings you expressed Kristina come and go with me.  16 years of this crap is sometimes too much for my brain and body to handle.
I have learned over time to take it down to second by second.  It seems time goes by faster that way.
I have also learned to count to 100 when I get super frustrated with things.
After awhile I get sone control over my feelings and can continue onward.
Not much help here.
I am in a dark part of things right now.

[Charlie B53]

It should be obvious, but often we overlook it, if it wasn't for dialysis, you may never have met all of the wonderful people in here that just like you, are just trying to cope with it, without giving up.

It's all in the attitude.  I'm sure you got it, even if it seems to slip just a little bit now and then.

[Angiepkd]

I don't know of any patient on D who has not found themselves depressed at times.  When I first started home hemo it was new and I felt better, so it didn't seem so bad, even 5x a week.  Once the newness wore off, the depression set in.  My transplant was put on hold, scheduled, canceled and re-scheduled.  With all the issues I have had recently, the docs told me I could lose the kidney.  Just the thought of going back on D filled me with such a sense of dread.  I told my husband I wouldn't go through that again.  He immediately reminded me of all the things I had to live for, kids, grandkids, family and friends.  I knew he was right.  I do take Zoloft, an anti-depressant, which seems to keep me leveled out.  Venting on this site was tremendously beneficial for me.  No one understands D unless they have done it.  I hope things get better for you as you continue on your dialysis journey.  Hope your transplant happens soon.  Aren't husbands the best? 

[kristina]

Thank you for your kind replies, skinnacat, kitkatz, Charlie and Angiepkd.
... I do hope things are going alright for you skinnacat, four times a day sounds a tight time-schedule
and I do hope time “runs for you quickly” every time... It helps me a lot as well to come on IHD ... and I send you my best wishes...
Sorry kitkatz, I do hope you get out of the dark part very soon as well. I can well imagine
that 16 years can become a bit overbearing on some difficult days and I do hope you get out of the dark place very soon ... Thinking of you
and sending you my best wishes...
Thank you Charlie, it is true that without dialysis we would not be alive right now and we would not have "met" and discussed
all sorts of matters with understanding people on IHD... 
....but sometimes the rigours and the strict regularity of dialysis can become a bit stressing
and I shall try to concentrate more on the good points of dialysis....
Thank you Angiepkd for your understanding... when I first started with dialysis in mid-December 2014,
I was under the impression that my transplant would take place around February 2015...
... Meanwhile I have been told that my transplant could take “a little longer” and that again highlighted to me the strict rigours of dialysis ...
... At the same time I began to realize that a transplant is much more complicated than I had first thought
and it also may take much longer than I had hoped...
Thanks again from Kristina.

[JW77]

After my long and colourful journey..  Yes, I still get depressed, and angry, and frustrated!

Counselling has helped me.. I've only once gone down the happy pill route, when I really needed it.


But.. I celebrate the stable bits, the smooth bits, with those everyday distractions of doing the things I love, with the few friends I've got left.

AND doing my best to give others support, or a kick in the backside when needed:)

From the darkness, you will only see the light up ahead, when your ready.

[Charlie B53]

Among all the things I have learned about dialysis, I have learned to appreciate so many things in life that I took for granted before.  In many ways, it's almost like being reborn. Without the religious connotations.  Others cannot leave out religious, and that's fine too.

Short note to skinnkat.  Have you considered talking to your team about switching to using the cycler?  I am on PD and was doing 4 manuals daily for about 18 months.  I totally understand the schedule, having 4 alarms set on my phone to remind me every time to stop whatever project I was elbow deep into, wash up, head inside and do my exchange.  At the time we had 3 dogs and 2 cats in the house and I felt I had to be available to open doors for them at night.  Only after losing 2 dogs to age related problems I started asking about the cycler.  Once I trained and brought it home I discovered with the three-prong cassette's longer hoses AND the patient extension hose, I could STILL reach that door.  Oh well, I have the cycler now and am free ALL DAY!  NO interruptions for PD.  The trade-off is I 'plug-in' early, 7 p.m. and don't get off until about 6 a.m.  My labs are even better than they were doing the manuals.  We would have thought.

Kristina,  Sorry to high-jack your thread, but seeing skinnacat expressing a problem I had to share.  Hopefully just knowing there is another option may be helpful.

Take Care All,

Charlie B

[kristina]

Thank you CW77 for sharing your experience ... I am not sure whether I should try-out councelling ?
... Where did you have your councelling? Did you have it at your dialysis-center and did the doctor at your center initiate it
... or was it initiated by your nephrologist?... And most importantly of all: did it help you?
Take care and thanks from Kristina.

Don't worry Charlie, I understand perfectly well and it is important that we try to assist each other
as much as we possibly can and try to find ways to make life on dialysis a bit easier,
because it can be sometimes  very difficult as it is ...
... and feeling a bit down and "under the weather" can originate from all sorts of different corners ...

Take care and best wishes from Kristina.

[PrimeTimer]

I've been in a dark place lately too, which is why I am going to brew some Hazelnut flavored coffee in the morning and have cinnamon rolls. And if I'm lucky, I'll be able to watch a few birdies feed from my window. Oh....the peace and calm of early morning...and to have it be all mine!

[kristina]

Hello PrimeTimer,
thanks for your frank honesty, it is very much appreciated.
... Your Hazelnut flavoured coffee and cinnamon rolls sound like a special cheer-up treat!
Do you bake the cinnamon rolls yourself?
... I have also noticed that it helps me to go for a walk in the Park
and look around and observe what is going on... that gives me new ideas
and helps me to put things into context again...
Thanks agian from Kristina.

[BobN]

kristina, the others have said it eloquently, but I daresay every dialysis patient gets hit with depression at some point.

I've found that by staying active, both physically and mentally, I can stave off the darkness.

Also, if you have a favorite humorous book or movie, something that is sure to make you laugh, use it at the appropriate time.  I promise you'll feel better.

And don't think you're alone, far from it. 

[redrider]

today is one of my days that don't feel good about my self ,i l only have theis day verso often  i payed my va. med bill , i layed  down for a little bit was not feeling good . all suden i jumped out of bed and went to my computer and payed my va bill thinking i for got to pay the bill  now my wife will not talk to just pee of i spent and extera   that she have to come out of here money be it is me mayi do not know....

[PrimeTimer]

Hello PrimeTimer,
thanks for your frank honesty, it is very much appreciated.
... Your Hazelnut flavoured coffee and cinnamon rolls sound like a special cheer-up treat!
Do you bake the cinnamon rolls yourself?
... I have also noticed that it helps me to go for a walk in the Park
and look around and observe what is going on... that gives me new ideas
and helps me to put things into context again...
Thanks agian from Kristina.

kristina, No, I don't make my own cinnamon rolls, they are store-bought Pillsbury brand and I heat them in the oven but nonetheless, they are wonderful! By the way, I agree with BobN...staying active both physically and mentally helps to stave off the blues. I have been feeling miserable and stressed and just plain sad and finally, these past few days I have been forcing myself to do a little more "mundane" simple and easy things rather than just work and chores. I love bird watching and identifying them from a list in a little book I have. Of course I have to be careful when I bring out the binoculars because I don't want my neighbors getting the wrong idea and think I am spying on them! Ha! Altho they are bit interesting sometimes too. Your walks in the park are an excellent idea....sounds peaceful, pleasant and something you can immerse yourself into without much effort. A doctor once told me that if I just concentrated on accomplishing one thing each day, that no matter how big or small it was but just one thing, do no more and no less, it would help me feel a little more in control of my life. And so I am trying to go back to that little lesson she taught me in order to regain a sense of control in my life again. I want to wake up and do things because I want to do them, not because I have to do them. And whatever I do, I need to know I did it because it was my choice to do it. So whether it be relaxing with a hot cup of coffee, birdwatching, walks in the park, these activities are needed by our souls in order for us to "keep-on keeping on". Oh, I hate depression....the doctor said that the more we go through and the older we get, the harder it is sometimes to "bounce back". I think she was right, which is why we shouldn't be so hard on ourselves when we hit a rough patch. I think the more we go through and the more our brains have to file or do to "retrieve" a file from our memory, the harder or longer it takes to get through things but we have strength from past experiences to draw from when the well gets dry. Hope you are having a better day and choosing to do dialysis because you want to and want to live life to it's fullest and not because you have to. 

[kristina]

Thank you Bob, redrider and PrimeTimer for your helpful suggestions.
Bob, I have been looking-up jokes on the Internet and they were very funny and I thank you very much for this suggestion
and I almost had forgotten that I still have a colleciton of "ancient" "Carry On-films" and they still don't fail to give me lots of laughter...
... I thank you for reminding me of this...
redrider, I keep my  fingers crossed that your wife and yourself get together again and work things out... Good luck to you both!
Thank you PrimeTimer. It is interesting to realize that the older we get, the harder it becomes to "bounce back"
and remove certain experiences from our memory ... One of my problems is that since I was a child, whenever I go to hospitals, surgeries etc,
I develop severe medical problems because of the artificial ultraviolet lighting in these places ... and it is so difficult to find a way for me there...
Thanks again from Kristina.