Struggling with my Mind

[muppy]

Hi Lovely Dialysis-buddies,

I'm wondering if you can help me?  I'm really struggling with my mental state during this process.  I'm on the transplant list but really don't know if I can cope with the wait.  I'm plagued by this feeling like I should be dead and while I'm here waiting for a transplant, unable to work I'm just a waste of space.  So much of my life has dissolved.... work, family, friends, physical strength, joy for life.... I feel like I just suddenly got elderly and life doesn't really want me anymore.  I had an amazing, wonderful life before CKF and now it's over and I can't imagine feeling healthy or positive or useful again.  This is so uncomfortable and I realise it's mainly my state of mind that is causing me to suffer, it's like my personality has changed since I've had this disease. I am on PD at home so don't see any other people on Dialysis.  Does anyone else feel like this?  Any suggestions about how to change my mind-state?  I wish you all well and am so glad that I finally found this site.  Cheers and Metta.  Muppy

   

[Riki]

I've been where you are before.  Best I can tell you is to find something that you like to do.  It could be anything, from a craft project to sitting in a comfy chair with a hot cup of tea.  Pick a time, and do whatever that something is at that time every day.  It gives you something to look forward to.  This is what I did, though for me, it happened by accident. 

My thing was a new tv show that I stumbled upon one night while trying to find a reason to continue to exist.  I enjoyed the show so much that I never missed it, still don't miss it.  In doing some research about the show, I found a very active online community and made a lot of new friends, who I found I had other common interests besides this show.  One friend, I got particularly close to, and now I consider her family.

Looking back on it, because it's been 7 years since I started watching this show, it was the looking forward to the next show that kept me going.  Everything else seemed to snowball from that one thing.  Once I had one thing to look forward to, I found other things to look forward to as well, and eventually life didn't seem as bleak as it was before.

[skg]

I haven't been quite there, but most everything you describe sounds familiar.

During the psychology evaluation for transplant, I remember answering more than one question in a way that would reflect depression -- and kept thinking, but if your life really does suck right now ....

I've managed to deal with depression mostly by working out that it isn't (necessarily) permanent -- things can get better, even if it's just my attitude that improves. (Well, that and boatloads of counseling and anti-depressants ....) Who knew -- prior experience with depression was good preparation for kidney failure!

cheers,
skg

[Riki]

I was never diagnosed nor treated for depression, but I'm sure that's what it was with me.  I was on PD at the time, and I was trying to figure a way for me to stop dialysis without anyone knowing what I was doing.  I didn't want them to figure out what I was doing, and try to stop me.  I am fortunate, I guess, that I never did figure a way to do it.

[Angiepkd]

I think everyone dealing with a chronic disease deals with depression at one time or another.  I am usually very positive and upbeat, but I found myself struggling to get through the day.  My doctor prescribed me an anti-depressant 2 years ago, and it has really helped.  I am not one who wants to throw pills at every ailment, but I gave the Zoloft a try and it made a huge difference.  From what I understand, depression is fairly common in people on dialysis.  Maybe mention it to your doctor and see what he/she thinks.  It is hard enough to handle the physical side of kidney failure, and depression makes everything seem worse.  I still have some "why me" days, but most of the time I am happy and glad to still be here with my family.  Finding a hobby like Riki suggested is also a good idea.  Even with the meds it helps to have something you look forward to.  Hope this helps!  Hang in there.

[Rerun]

I thought before .... the farther you have to fall the worse dialysis is for you.  I was making 70K a year and traveling all over and having the time of my life so being stuck in a chair and watching life go bye bye was tough.  People who find coming to dialysis a social event made me crazy.  OMG now I'm there....

So I know how you feel.  I hope you get your transplant soon.

[catfish10]

OMG been there and back!! I have been diagnosed with both complex ptsd, shares some characteristics of bipolar 1 just not all of them.  I am currently on 2 psych meds one for mood stabilizing and the second  to keep me from flipping a bitch.  dialysis takes a toll on all aspects of your life, at 8 years in, i still go through days that i want to permanently end.  but when i weigh the pros versus the cons, the pros are waaaaay greater.  i hate the "in limbo factor", no one knows when, just hopefully soon.  don't stress yourself out any further, it is totally normal, just get a psychologist or psychiatrist if you would rather go that route and handle that shit. believe me, you will wish you did it earlier, not being able to surf due to me being so weak & easily fatigued definitely dampened my soul.  on the right meds, i can see the positive, not just the negative, it takes time. YEARS for me and still going!  yes life is difficult, but it is for everyone in some way or another. you just kinda gotta go with the flow. 

take care and stop fighting your thoughts!

[cariad]

Oh, muppy, I'm sorry to hear this.

I have felt some of the feelings you've described. I agree with Riki that you need to find something in life, large or small, to focus on. For me, I chose to focus on other people's problems. Getting the occasional 'thank you for being there for me' helped me feel that I did still have something to offer. When I was at my worst physically, I spent a lot of time on here answering as many questions and offering as much support as I could, and also asking for support if I needed a lift. Additionally, I got quite absorbed in different television programs, caught up on a load of reading, followed politics more closely than I do now. The internet is such a miracle when you are ill - I was able to discover weird and wonderful things, places that I wanted to visit or activities that I wanted to try once I felt well enough, and even in end-stage renal failure I had good days mixed in with the bad. Check out the random links thread some time - you are sure to discover something that you never knew existed.

Some times there was absolutely nothing that could lift my spirits and it was all I could do to hang on and keep telling myself that these intense negative emotions would pass. I hope you find a way out of this darkness.

[Gerald Lively]

[How do I cope?]  I don’t know how to answer that one. 

I have had cancer four times, five if you want to count a minor skin problem, and I have lost count on the number of times I’ve been put under for surgery – one of those was a radical prostatectomy lasting four and a half hours and four days in the hospital and it ruined everything.  I had an eye surgery for cataracts and they didn’t put me under enough and, yes, I felt the cut on my eyeball and I’m told I verbally expressed myself, grabbed the surgeons arm and I don’t remember anything after that. It was all over in minutes. The eye doctor says she’ll never forget that experience but will not repeat what I said.  Inquiring minds want to know!

By far the worst medical experience I’ve had was dialysis.  The process eats away at your defenses.  If you happen to be the type of person who is slow to recover, then your one day off between dialysis sessions is not enough, under ordinary circumstances.  This isn’t the slippery slope we hear about, it is, instead, it is a relentless repetition of a process that you know with absolute certainty, will not cure you of your kidney ailment. You’re the half-dead fish on the stringer.  That message was brought home one day when my dialysis nurse farted then walked away.  I couldn’t walk away.  I was tied to a machine, stuck in a chair and I couldn’t hold my breath long enough to avoid the flavor of my nurse’s internal colon atmosphere.  There I was, a prisoner suffering a torture worse than waterboarding.  I’d been fartorized.  Listen carefully, I just revealed how I cope.

Look for the irony, find the humor, then find a way to express it all. 

Your reaction to what I write is saving me.  Your nonmedical reaction helps me minimize the forthcoming trauma.  And isn’t that what this forum is all about?  Take a few moments and think about it; this is a mind trick, a way of taking your conscious thoughts off your problems even if it is only slightly off-point from the actual problem.

If they have you stretched out on a gurney headed into surgery, sing, or tell an off-color joke - - anything that takes your mind off anything serious.  Invent something – (MooseMom is my mother) // cariad is an international drug dealer // HemoDoc is an NSA operative and his name is a code //  and Michele Bachmann wants your body but can’t find you.  Do you want me to set you up?)

Go ahead, ask me a question, ask anything.  Without a doubt I won’t know the answer.


[previously posted on Gerald Slept Here . . .]


gl

[muppy]

  thanks everyone that all helps a lot. Will talk to my doc and find something to do. Going to see the Dalai Lama teach this weekend. If that doesn't help nothing will. So glad I found this site. You are all amazing. Much metta. Mupps

[woodsman]

while i have been in your shoes i try to keep busy by doing things they take much longer but i keep sane doing them

things done 



raised some baby chicks


get out and if it takes many hours just start somethjing, now i am building birdhouses....

[muppy]

while i have been in your shoes i try to keep busy by doing things they take much longer but i keep sane doing them

things done 



raised some baby chicks


get out and if it takes many hours just start somethjing, now i am building birdhouses....


Wow! woodsman what a legend you are...... Love that chookhouse..... what a beauty!  I had chooks but they all got taken by foxes..... have been thinking of doing some work on the chookhouse and getting some rescued battery chickens..... thankyou that's so inspiring!  blessings

[MooseMom]

I always had to fight really hard to change my mindset.  I saw a hypnotherapist, a psychiatrist, a psychologist, a counselor, a naturopath and even a woman who did biofeedback.  None of those things helped.  I simply had to put my mind to other things.  I had to find small things that brought me some pleasure each day.  I'd plant an herb garden.  I made it a point to learn new things.  I'd buy DVDs from The Teaching Company with courses ranging from music appreciation to the history of the Middle Ages (my husband is getting me a course on food history for my birthday).

I couldn't, though, keep my brain occupied at all times, and there were days when I couldn't get up enthusiasm for anything.  On those days, I wouldn't beat myself up for feeling down.  I'd weather the story and remind myself that yes, tomorrow is another day.

[BattleScars]

Hi Lovely Dialysis-buddies,

I'm wondering if you can help me?  I'm really struggling with my mental state during this process.  I'm on the transplant list but really don't know if I can cope with the wait.  I'm plagued by this feeling like I should be dead and while I'm here waiting for a transplant, unable to work I'm just a waste of space.  So much of my life has dissolved.... work, family, friends, physical strength, joy for life.... I feel like I just suddenly got elderly and life doesn't really want me anymore.  I had an amazing, wonderful life before CKF and now it's over and I can't imagine feeling healthy or positive or useful again.  This is so uncomfortable and I realise it's mainly my state of mind that is causing me to suffer, it's like my personality has changed since I've had this disease. I am on PD at home so don't see any other people on Dialysis.  Does anyone else feel like this?  Any suggestions about how to change my mind-state?  I wish you all well and am so glad that I finally found this site.  Cheers and Metta.  Muppy

 

I've been exactly where you are at, even recently. I could have wrote that and I'm also on PD. I was telling my wife a few months ago that I felt like I was just taking up space. I've lost so many friends because I can't do the things I used to do or they weren't really friends and tend to judge my situation. I take medication that makes me feel 20-30 years older than I am. I'm tired all of the time. I'm in a constant brain fog. The days when I feel awesome are so rare even though I'm trying to stay upbeat and positive. I know exactly how you feel.

Here's how I get through it, this may or may not work for you but take what you can from it. First, my 30 year old cousin just got diagnosed with Huntington's Disease. If you don't know what that is look it up. It's bad. It makes what we have seem very good. He's going to die a young man and go out very slowly ending up in a nursing home. I was trying to encourage him and told him about my dialysis and what I do every day to stay alive and he told me how bad he felt for me and how it sounded terrible. I didn't have the heart to tell him I wouldn't trade places with him. It made me realize that yes kidney disease sucks but most of us do have some options. Waiting sucks but there's a chance that we will get that transplant and get our lives back. That hope sustains me. We have our minds. We can still do a lot of things and we need to be grateful for the things we have instead of being bitter for what we don't have. None of us deserve this, but we have to deal with it. Easier said than done, I know.

Also, think about this, if we were here 60 years ago we would have a death sentence. There wasn't any options for kidney failure. There are people that live many, many years on dialysis, some even decades. I think it's important that we take good care of ourselves, eating right, exercising, and even taking care of our minds to help offset some of the risk factors that come with CKD. The fact is we aren't dead. We are here and we need to make the best of things. Being on PD I don't know a lot of people on dialysis so I try to make friends with people that can relate, that have been through a transplant and/or dialysis. IHD helps me a lot too. I don't know what I would do if the internet wasn't around and I was dealing with this all by myself. We are lucky we live in this day and age.

My wife works at a research facility and just two months ago they actually produced a working kidney! Now this was for a rodent and it isn't perfect but it's the first step. Medical breakthoughs are happening all the time. In our lifetime we may see some amazing stuff that might even save you and I! There's that hope and honestly I wouldn't be surprised to see humans get working kidneys developed in a lab in the next 2 decades. We have to look at the positives.

Try to appreciate the little things in life. Take time for yourself and don't feel bad about it. Surround yourself with people that support you and have your back. Don't even worry about the ones that don't, they are a waste of your time. Get into therapy. I don't say that to be mean. I think everyone needs it and I'm even looking into it for myself. It will help you sort things out. Whatever you do, don't let this disease get you down. Celebrate the fact that you are still alive. There's a reason you are.   

[BattleScars]

while i have been in your shoes i try to keep busy by doing things they take much longer but i keep sane doing them

things done 



raised some baby chicks


get out and if it takes many hours just start somethjing, now i am building birdhouses....

That's awesome Woodsman! If I had a yard I would start a project like that. Thanks for sharing

[ryosaki]

Hi Muppy,

First of all I'd like to say that you aren't the only one that feels that way, I'm sure everyone on dialysis has felt something similar to your situation. I think it's great though that you are actually saying something about it, and it has helped me in some ways reading some of the replies of this post. I'm 29 years old now, and have been on dialysis for 5 years and I am only now "mentally" getting use to it. I use to live a very busy and productive life before dialysis. it was a life of travel, adventure and play, and like you, the feeling of being "a waste of space" is exactly how I felt as soon as I had my first dialysis session. Even with all the positive support around me from friends and family, I just couldn't help but think that it was all just pity. Knowing that people are having to look after you was the hardest part I think, especially in the beginning. I think that's why I sought out for this support website in the first place! To find a community of people in the same boat as me, and people that I knew could give me honest advice to take out the "pity" factor. To me, no one can really understand what we go through unless they are going through the same thing.

Now, this is how I think I managed to stay sane through all of this. First of all, which would be the hardest step, is to truly understand and realize that this is part of your life now. For me, this took the longest time to get over, but it happened. it's hard to hear, but this is your life! it's like losing a limb! There is absolutely nothing you can do about it. Take it in, understand, take a deep breath, swallow and accept it!  This is going to take a while, it's different for everyone, but that's ok, it wont happen over night. it didn't with me. But I tell you, once you get over that hump, I mean completely get over it, you begin to feel better about yourself, and in a way fight back!

I now feel in control of my life again. I see dialysis and my way of life as a challenge now. I focus on keeping healthy, every single aspect of being healthy, I have become obsessed. I pay attention to everything I eat, drink, make sure I get enough sleep, I know everything there is to know about the dialysis machine I use at the unit. I have even taken control of my own needling of the fistula. We are "normal" like everyone else, we just have to work a little harder to get there. You have it in you, everyone does, to get through life on dialysis, it's just going to take two things. Time, and understanding.

Ask me anything about my life, and I will tell you an honest answer from my point of view. Thanks for bring up your problems, and I hope that helps.

Ryo

[BattleScars]

That's awesome advice Ryo. I agree about taking control of the things you can control like eating right and paying attention to your health. That will always make you feel better. Also coming to terms with dialysis is something we all have to do. Some days I feel like I've finally accepted it and then I have my bad days where it feels like I still have a long way to go. I'm  going to take some of your advice and apply to my life.

[muppy]

Thanks everyone for sharing your stories..... it is so helpful.... I caught up with an old friend a week ago who has worked as a psychologist for 40 years.... she said that over the years she has worked with alot of dialysis patients and that depression is very common.... she said that your brain chemistry can get scrambled by the chemical imbalances in the body and that short-terrm anti depressants can be useful.... this was so helpful to me....  i'm going to my doctor tomorrow to ask about it....

I realise how lucky I am as my father died of kidney disease at 38 years old, there was no treatment available for him then.... we have so many treatment options..... yeah acceptance is the thing huh?

lots of love xx

[Angiepkd]

Always good to have a plan!  And accepting that this isn't something you can deal with on your own is half the battle.  I have to admit I feel a little self-conscious when I have to list my meds and the anti-depressant is on that list.  Silly, isn't it?  Why does there have to be a stigma attached to admitting you need a little help in dealing with your situation?  I find myself trying to explain why I take them, as if I need justification.  Even though it makes me uncomfortable to admit I need them, I am thankful that I have the option to use them.  My husband calls them my "happy pills".  And I will take happy over sad or angry any day!  Do whatever it takes to feel better!  Best of luck to you!

[ryosaki]

By the way, as an extension of my earlier post about taking control of my health and seeing dialysis as a challenge. I'd like to also share that 3 years ago I was on countless meds for blood pressure and all the others! I'm sure everyone can relate! I think at one time I was taking 12 tablets of meds a day, or something like that. Through healthy eating and habits, and "fighting back", I now only take one tablet of caltrate with meals.

[BattleScars]

By the way, as an extension of my earlier post about taking control of my health and seeing dialysis as a challenge. I'd like to also share that 3 years ago I was on countless meds for blood pressure and all the others! I'm sure everyone can relate! I think at one time I was taking 12 tablets of meds a day, or something like that. Through healthy eating and habits, and "fighting back", I now only take one tablet of caltrate with meals.

I'm right there. At last count I'm taking 13 meds right now. The one that really gets to me is lababetol to control blood pressure. It works really good to keep my BP down but the side effects are severe exercise intolerance and I have lost all interest in sex. Because I'm married this isn't so good lol. I skipped a day by accident and I felt 20 years younger. I had so my much energy and no shortness of breath. As soon as I took that pill I couldn't even walk up a flight of stairs without getting winded and having to stop. The catch 22 is I need to lose some weight and exercise to get off this medicine but I can't exercise. I would love to get off some of these meds like you did. I would be grateful for any advice. 

[Angiepkd]

By the way, as an extension of my earlier post about taking control of my health and seeing dialysis as a challenge. I'd like to also share that 3 years ago I was on countless meds for blood pressure and all the others! I'm sure everyone can relate! I think at one time I was taking 12 tablets of meds a day, or something like that. Through healthy eating and habits, and "fighting back", I now only take one tablet of caltrate with meals.

I'm right there. At last count I'm taking 13 meds right now. The one that really gets to me is lababetol to control blood pressure. It works really good to keep my BP down but the side effects are severe exercise intolerance and I have lost all interest in sex. Because I'm married this isn't so good lol. I skipped a day by accident and I felt 20 years younger. I had so my much energy and no shortness of breath. As soon as I took that pill I couldn't even walk up a flight of stairs without getting winded and having to stop. The catch 22 is I need to lose some weight and exercise to get off this medicine but I can't exercise. I would love to get off some of these meds like you did. I would be grateful for any advice.

I am off all blood pressure meds since starting home hemo.  I am not sure if PD has a similar benefit.  Maybe one of the experienced PD users can weigh in with their experience.  I know what you mean about the BP meds making you feel crappy.  I was on them so long I didn't realize how they affected me until I stopped taking them.  It is very odd to not need all of those pills.  I am down to taking only vitamins for D, a diuretic and my "happy pill".  Guess I will have to get back in the habit of taking a lot of meds if I get a transplant.  Good luck!

[Grumpy-1]

I was on PD for almost 3 years and shortly after starting PD, I came off both of my blood pressure meds.  I'm back on hemo (for a short time) and I have to watch my BP a bit more.   Grumpy

[ryosaki]

By the way, as an extension of my earlier post about taking control of my health and seeing dialysis as a challenge. I'd like to also share that 3 years ago I was on countless meds for blood pressure and all the others! I'm sure everyone can relate! I think at one time I was taking 12 tablets of meds a day, or something like that. Through healthy eating and habits, and "fighting back", I now only take one tablet of caltrate with meals.

I'm right there. At last count I'm taking 13 meds right now. The one that really gets to me is lababetol to control blood pressure. It works really good to keep my BP down but the side effects are severe exercise intolerance and I have lost all interest in sex. Because I'm married this isn't so good lol. I skipped a day by accident and I felt 20 years younger. I had so my much energy and no shortness of breath. As soon as I took that pill I couldn't even walk up a flight of stairs without getting winded and having to stop. The catch 22 is I need to lose some weight and exercise to get off this medicine but I can't exercise. I would love to get off some of these meds like you did. I would be grateful for any advice.

Yes! I remember the side effects of blood pressure tabs too! terrible! They change your mood too! I am very grateful to be off them now, and to maintain being off them too. There were a few things that helped in getting my bp back to normal, and off the meds, one was making sure you control your fluid intake, I mean really control it and be consistent. Find the right target weight! Im pretty sure there was a long period of trial and error there for me. One of the big things I noticed back then (see how I talk about it it now! "back then"! hehe) was the amount of energy I had during the day directly relates to how much sleep I got the night before. Anything less than 8 hours sleep, and it felt like I slept for 2 hours. After a good rest, a healthy meal (watch portion size), I had enough energy to take a long walk or bike ride, nothing too intense. I always did it in the mornings or late afternoon to avoid the heat, so I don't drink too much. Walking doesn't sound like much, but it will work if you make it a habit. The main thing for me is having energy to do things. Having energy changes your whole mindset, when I felt bad from sideeffects from meds or whatever it was, I didn't feel like doing anything, I was lazy, I was moody and angry and just had a bad outlook on life. Changing your mental state through healthy living changes everything! trust me!

[BattleScars]

That's the biggest problem with my bp meds are that they sap my energy. I already have rough days from the kidney issues but I really believe the meds are the worst part about this disease as far as the side effects go. When I skipped that day I felt like I could run a marathon. I felt on top of the world. I had just accepted I would feel bad every day. When my nurses would ask me if I was short of breath I would tell them and explain it was a side effect from my bp meds and they would just ignore me.

I already started dieting this past week. I started out at 251.3 last Friday and this morning I was at 244.7. I know a lot of that is fluid from watching how much I drink. I also started walking. Walking doesn't bother me as much unless I have to walk up a hill which is next to impossible on this medicine but I know if I just keep going I will be able to get off it for good. My goal weight is 185. I'm 6'2" so that would be healthy for me. I'm just going to work at it all summer. I'm also being a lot more careful about how much I eat and what I eat.