Like many of you I’m sure, but just speaking for myself, I am so incredibly tired of dialysis and kidney disease. I try to just get through a day at a time but it just seems like an endless bad dream ! I still work but have reached a point where I am to tired to do much else. As a former athlete and long distance runner this is very frustrating to me. I cannot get up the energy to clean house or cook. I have lost my joy of eating as everything taste bad, smells bad or makes me sick. Even with binders I itch like crazy all the time. I guess I just need to vent as I have no really good support network. I have considered stopping dialysis but have a 27 year old son who just wouldn’t understand. He lost his dad when he was young. I have a cat who is getting old and has kidney disease and heart problems like myself. I worry as he is 16 yro and I don’t know how I would go on without him. My life is very lonely and no one seems concerned about my health, mental or physical. I spend to much time wishing I would just die. Have stopped my dialysis with that intent in the past, then everyone gets all concerned, how sad ! Well I don’t know what anyone can say, I guess I have to decide if I will keep keeping on, I am on transplant list but don’t even care about that anymore. Good luck to those of you also on this journey.
Tired : Like many of you I’m sure, but just... - Kidney Dialysis
Tired
HI Frankie, I would speak to you doctors to see if there is a network or support group in your area. There is also the National Kidney Foundation Peer Mentor program to help and give you someone to talk to who is going through what you are. I understand the grind gets to you and it is so hard to keep going. Maybe there is some volunteer group you can join and that might put some life back into yours. When you give back, there is a reward of doing for others that also makes your feel better and maybe give you more reasons to stay here on this earth.
855.NKF.PEERS (855.653.7337)
Hey i know what your feeling. I have those days to. We need to stay strong. Keep on keeping on brother were here for each other.
I care. And, thank goodness for cats. Sounds as if you need some professional help with your depression. Life does this to us sometimes. It sucks the energy right out of us if we let it. Dialysis is supposed to he a life saver. Its a way to continue on living when our disease advances. First, check with your doctor(s) to make sure condition, such as, anemia or other medical conditions arent dragging you down. Then, you need to talk to the social worker at your dialysis center to see if they can refer you to a counselor. Somehow I think you're the kind of person who doesn't reach out for yourself. We cant rely completely on family to fill our lonely hours. When I relocated to another part of my state to be near family, I left behind years of friendships that I couldn't find in my new homeOne day, out of desperation, I posted on a neighborhood forum to see if there were any ladies who wanted to meet for lunch. Twelve women answered, all from different backgrounds and different ages. Six of us became and remain friends over the past few years and are now there for each other
I was so amazed that one little step forward on my part helped my loneliness. There are lots of people out there who need you and you need them. This wasnt the only thing I did but this one worked. I hope you can connect with a counselor who can help you find others. I'm sending positive thoughts and best wishes
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Thank you for your encouraging words, I have reached out but cannot get beyond how miserable this disease and other conditions it has brought make me feel. I feel like less than a person and as though I am not living much of my life anymore !
The mistake youre making is that you you stopped reaching out. I had tried multiple reaching out things and at first nothing worked. You have to get a counselor or social worker to help you. Mainly, just dont stop. Practice saying "I'm lonely and I need you to help ." Not sure where you live, but psychologists, counselors. hospitals, communities often have group meetings for people dealing with medical problems. Find one. You need help, but you have to "continue " to take those first steps. No one can find you sitting at home. You have.a forum of people here care and understand. I consider that lucky. If you cant meet us, then talk to us. Well hear you. Best
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Thanks so much for your insight
If you'd like to chat with me I'd be happy to listen and talk to you. I too used to be athletic and did ultramarathons but find getting through the week exhausting. I live in a very remote area, no neighborhood with closest farm 1/2 mile away. I do have dogs and cats and 2 horses. I'm not on dialysis yet but it's creeping closer. I care and would love to connect with you.
Dialysis filters out not only bad stuffs in our body but also good nutrients, that's why we are so beat up after the run. but I hope your doctor had paid attention to give you blood growing injection and iron, when your hemoglobin comes up, you will have some more energy,. Think towards the good way---we dialysis three days a week, think of it-we still have four days we can be happy, God is a good God, He makes up for us, He always gives me some thing with a little joy to compensate the not so happy parts. May you find the Lord Jesus, may He help you, going to church and fellowship with other believers always makes me happy, gives me hope and meanings to my life. God loves you.
WOW!!!! I'm shocked there is someone out there like me!!!!!! You pretty much described my life, except I have a dog instead of a cat. Our fur babies are quite literally life savers.I also live in a small community, with limited resources. The closest we get to any therapy is in the waiting room at dialysis, we all sit around & bitch about dialysis. We haven't even had that due to Covid. I really miss talking to my friends.
............. & then the counselor in our hospital system is my husbands cousin, we socialize with them, so that leaves out any 1/1 therapy for me. I could drive 2 hours to a big town, to talk for an hour then drive 2 hours back home, not worth it for me.
Go for a walk. Get out of your head. Find something to binge watch on TV. (I love binge watching!!!!) Cry it all out if you need to. Go annoy someone, I usually go to my in-laws & the kids play games with me. Go shopping, find something fabulous for just you, within your budget.
I can't think of anything else I do to get out of my funk.
You will get thru this. I won't lie, its hard. I won't use any trite sayings either. It's hard, it's depressing, it's exhausting, it sucks!!!!
But. I have many more people to annoy. Places to go.
& some hell to be raised.
frakie, i know how you feel .it's hard most times to feel positive.i'm ending my 5th year at the end of august.i'm tired of it too,but i guess it's better than the alternative.i was preparing for a transplant a couple of years ago .i did all the tests lost weight,then i had 3 mini strokes, and then they tell me that i am not a good candidate,it was like some one kicked me as hard as they could in the stomach.i get depressed and anxious and feel useless.i have thought about stopping dialysis. i have no ambition and i don't seem to care about anything anymore.i keep telling myself as i look around and i realize there are people worse off than me.so i deciced it's time to get help from a proffesional.remember YOU ARE NOT ALONE.there are a lot of us out there, we all need to stick together and help each other.don;t give up. good luck
What a great idea to find new friends!
Jayhawker
It was a shocker to have so many women call and ask to come to our first coffee and cake. We all still marvel how six of us stuck, all from different walks of life, all ages, but all with the same to need to bond.
Where did you all meet?
At someone's home but now we meet for lunch at local restaurants. We havent met for almost a year because of the pandemic; however, we have kept in touch and we have plans to meet in a week or so now that we are all vaccinated. Best
Hey Frankie24, I believe that you are not alone in this struggle, because there are many others that I am sure understand your position. I myself have has kidney disease twice in my life and if I didn’t have my family and my faith in Christ, I too would be in that same mental position. Understand there are many groups including this one that was made just for reason as the one that you are dealing with at this very moment. I think I speak for everyone here when I say this group was made for people like you and we all care about your well being and we welcome you with open arms and are ALWAYS here for you. You may vent and post whenever you want and you will always get replies. There are many loving caring people that are on here with lots of knowledge to help you through your journey. DO NOT give up, you must fight through what the enemy would love to see you do and we are all here to help you fight through what you are going through. Also I would suggest maybe seeing a therapist or someone that is close to you and talk to the, as well about what is going on mentally with you so that maybe they can give you some advice. Maybe even a pastor who can pray for you. If you need someone to talk to who understands what you are going through you may always PM me on here. I always check my messages and would love to hear how you are doing and help you if I can. I will be praying for you. By the way I have dogs and can truly say I understand what you are talking about with your cat cause I surely would be very upset if I didn’t have my dogs, they are a very good moral support system. Blessings and like I said I will be praying for you. Cheers.
Thank kind you for your beautiful and empathetic words of encouragement. I do have faith and pray but it wains at times. I see a therapist and psychiatrist but do not find them particularly helpful . I have spent my life giving back to others and I just want to feel like someone/anyone cares what I am going through. I feel so selfish for feeling that way but it is what it is. Thank you for taking the time to respond, I will keep your caring words close in mind.❤️
If they're not helping fire them .just like you would your primary and/or your nephrologist. A lot of mental health professionals have no experience working with medical patients. As a long shot, call your State Psychological Association and ask for one that does work with medical/ health patients.
And as someone else recommended, join a church group. I've always marveled as to how nice it was for people to find friends and social outlets while church members.
Best to you. Keep us posted. We care
Frankie, for some years I suffered hearing voice, I refused to acknowlege that I got mental illness, suffered much unnecessarily, but at last God opened a way for me to go to the psychiatrist, he gave me Resperidon, that turned down the voice, i almost didn't hear them no more and i live a normal life, I don't have to suffer. For your therapist and psychiatrist even though they may not seem helpful, but if they prescribed you some medicine, I recommend that you keep taking them if no ill side effect.
Frankie24 my offer always stands that you are always welcome to PM me anytime you need someone to talk to. I truly understand where you are coming from cause I too have been there myself. You will always be in my prayers. Blessings.
So kind of you to do this. We all need that bond.
Drmind I would do this for anyone on this group because we all have one commonality and that is we are all dealing with a very harsh disease that yes is very survivable but takes a very harsh toll on your mental and emotional well being. We have to be able to bond together and help others defeat and celebrate when we have victory over this disease and other ones as well. Blessings.
Hello Frankie24There is ALWAYS a better day ahead - may not be tomorrow or next week but it does come! Been there done that too. Yes it’s a miserable thing but for the last 6 years of my I have always seen that I have a part job three days a week. Sometimes I have to work overtime - but I have terrific benefits! I get to live and I get to see my grandsons and my children - yes often times they will see me sleeping on the couch and often my wife gets angry with me because she forgets it’s not my fault...but life goes on!!
Hello Frankie I'm so sorry to hear that dialysis is taking a toll on you. In order to get through the process of dialysis you need a support system, because this journey your on will not always be an easy one. I'm a diabetic, and I have diabetes, blood pressure and, fibromyalgia, so I can understand how you feel there are times where I don't want to deal with dialysis checking blood sugar taking insulin shots take all medications let alone deal with my fibromyalgia. When I get like this I talk with God. Because for me he is the only one who will understand what I am going through. But back to you reaching out for help takes courage you are differently are in the right place here you will receive plenty of support here at health unlock. And I am here for you too anytime you need to talk I will be more than happy to listen to you. I know that you may feel like throwing in the towel to stop treatment for dialysis, but I believe that your son would be very saddened not having you in his life, are you in a good dialysis center? because that is very important to have good care as well as a support system with your social worker, your doctor and etc..here's a website that you can compare dialysis center to see who offers what you need . Medicare.gov/ dialysis facility compare. Look up your dialysis center and compare them to 2 other dialysis centers. Until then please feel free to come and talk with me and know that here at health unlock you are never alone.
Praying for strength and hope for you. God bless you, Frankie.
I was moved by your story. Dialysis truly sucks. It's like a part time job that you didn't want in the first place.
My first few months were constant machine problems. I went through 5 control heads on the pure flow before I got one that worked consistently. Sticking problems every other time I went to dialyze. Gradually everything sorted itself out. I like yourself have been an athlete (bicycle racer and tournament tennis player for 50 years). Everything just came to a screeching halt because of the anemia and low iron. In the back of my mind I remember a saying that has stuck with me......dying is bad!!
I am fortunate in that I have 3 potential donors. Even more so because I have a rare blood type. I'm not by nature a very patient person so the process leading up to the transplant is exasperating. I push forward because dying is bad!
Prior to staring dialysis, I was invited on a tour of a Fresenius facility. I was introduced to a gentleman that at the age of 50 already had a failed graft, fistula, kidney transplant, developed heart disease and erectile dysfunction. All of a sudden my "woe as me" attitude evaporated.
I would like to be there for you even though it is only in writing. This is truly a sharing type of disease because as in my case I need my wife or daughter to assist with home hemodialysis.
No one should be alone as they live on with kidney disease.
I hope in some small measure this has been a help.......
Barry
Thank you for posting this reply... Ii hope it helps Frankie! I know it has helped me🐶🐶 My failing kidneys and I thank you💜
Jayhawker
NO one should be alone as they live on with kidney disease, any kind of cancer or psychiatric condition. I thankful for my mother, when I first discovered that I have chronic kidney failure, She took me in her house, had me faithfully go to a well-known Chinese medicine kidney specialist, taking my meds..............., She prayed for me with all her heart and had her church pray for me.........thank, mom.
My name is Tess, I understand some of your frustrations and anger. I’ve been on dialysis for over two years, and I wanted to quit many times even though I have a loving husband. I have mental illness also. I am depressed a lot. But what I have done to feel better is to do things for others here at dialysis. I have become friends with them, when someone is really sick I give them a card, or I give others a car just to be friendly. When you do for others it helps you, and it helps me get out of my depression and feeling sorry for myself. I looked for a support group here also and in there nothing. Are used to fret and say why me, why did God give this to me. But now I look for things to be grateful for. It could be cancer and I could be in pain. I’m not in physical pain with dialysis. I look around me here and many people have lost some of their limbs come others are in wheelchairs, I can still drive my car. That’s a lot to be grateful for. I don’t know if this helps you at all, but we have to look at what’s around us, find something to be grateful for and MoveOn. Remember this makes you stronger, and you have a child who loves you. You can always write to me.
My name is Tess, I understand some of your frustrations and anger. I’ve been on dialysis for over two years, and I wanted to quit many times even though I have a loving husband. I have mental illness also. I am depressed a lot. But what I have done to feel better is to do things for others here at dialysis. I have become friends with them, when someone is really sick I give them a card, or I give others a car just to be friendly. When you do for others it helps you, and it helps me get out of my depression and feeling sorry for myself. I looked for a support group here also and in there nothing. Are used to fret and say why me, why did God give this to me. But now I look for things to be grateful for. It could be cancer and I could be in pain. I’m not in physical pain with dialysis. I look around me here and many people have lost some of their limbs come others are in wheelchairs, I can still drive my car. That’s a lot to be grateful for. I don’t know if this helps you at all, but we have to look at what’s around us, find something to be grateful for and MoveOn. Remember this makes you stronger, and you have a child who loves you. You can always write to me.
Hi Frankie! I can totally relate to how you’re feeling. When I found out how bad my kidneys were in 2015, we had just moved. I knew no one. My husband had to work a lot so we could get by. I was all alone except for my animals. At the time I had 2 cats and 8 dogs which kept me hopping. No contact with my family. But I managed pretty well until last year when I went on dialysis in April. Had surgery for pd catheter. It was botched, had to be redone. In hospital for different things. Got Covid in July. Was sick for awhile. Still can’t smell right. Luckily I had joined several dog groups. I talk to them everyday. I’ve even driven to meet one. Some have become my best friends. I can talk to them about anything. One even started a campaign to find me a kidney. She hired a photographer to take pictures and put it on Facebook. Well I had a member of the group offer to give a kidney. Unfortunately it didn’t work out. But then an amazing thing happened. My cousin saw it and sent a message she wanted to be tested. She was a match and surgery was scheduled for November of last year. Well one of my Covid tests was positive even though I didn’t actually have it. Surgery was canceled. Had to wait so many days to be tested again. Surgery was rescheduled for December. Again a false positive on Covid test, surgery cancelled. Tested again, surgery scheduled for February. This time I made it. My kidney is doing very well. I have had some other problems caused by the meds I think. Working through those. I tell you all of this to say there will be hard days. Days when you question why me? When it seems like everybody is going along without a care. I guarantee you anyone who has kidney disease has those days too. You just don’t know it. I wouldn’t have made it through without my groups, someone to talk to. I hope you will research it and join some. In the meantime, you are not alone! I’m always here for you if you need to talk. My group was IHeartSeniorDogs. From that I joined 4 more! Keeping you in my thoughts and prayers. God can do anything!!
I HEAR YOU!!!!! I'm also very isolated & little in the way of a support system. Central South Dakota has no support groups & limited resources. My dialysis team is awesome & really keep me going. I have thoughts of stopping dialysis too, but I do have family that wouldn't understand. You do need to get a baby kitten!!!!! 2 cats are as easy to take care of as 1. Your old cat will train the kitten to use the litter box ECT. Plus kittens are fun & entertaining. You sound like me, you need something fun.
Just don't become "the weird cat lady".
Make yourself get out of the house. Go DO SOMETHING!!!! I know how hard it is to get out & get out of your own head.
Walk around the block. Go for a drive. Anything to get a change of scenery. Go to your local Dollar Store & get yourself silly stuff. Try some adult coloring books, & use your imagination mixing & matching colors & Designs.
Try anything that will get your mind off this frustrating disease.
Others don't understand because " you look fine".
Please let me hear from you again. I think we would be good for each other. I know it would help me to have someone to bitch around with 😀😉😁
Great advice! Get out and do something... I needed to hear that so thank you!!
Jayhawker
Hi Frankie I can relate completely. But you have all of us here to talk to who understand. Ultimately though its your choice. I hope and pray you chose to press on. It may not seem like it now but if you were gone you would be greatly missed. So please try to hang in there and try to find your reason to continue on. For me its my 16 year old son. So i press on because i know he needs me and i know God has a plan for me. Not sure what but i wanna stick around to find out. Hang in there you got this! And talk to your doc and or psychologist.
Hi Frankie, How are you today? Everyone on this post has given you some good advice and I hope you've been able to take it in and think about trying to make your life better. My experience on dialysis was different because I have PKD and it took many years before I needed dialysis, so I had time to deal with my disease and go from being depressed and scared at first to almost like going through the stages of grieving and ending up finally at a place of acceptance. Then I had to start over when I started dialysis. I went in thinking that I could handle it and immediately things started happening that I needed the help of the wonderful staff to get through. Things like the size and pain of the needles, excess bleeding sometimes, people also panicking around me, the pain of cramping and things like that. I was on hemodialysis in center, which I chose because of the safety of being in a group setting with professionals who could help me. I also started developing a support system of the other patients as well as relying on my husband for help with transportation until I could drive myself and just plain being there at home so I could rely on him. We also had a cat and a dog, then another dog. They've always been our family, since we had no children. I did have a part-time job when I started, in home health care, but had to give that up after I had stress-induced cardiomyopathy at dialysis and began cardiac rehab afterward. I fully recovered from that. I also had several fistulagrams , at least one per year where the surgeon goes in and breaks up the clots and inserts a balloon to keep my fistula open so I could have successful dialysis treatments. This all became like routine maintenance for me and I grew to accept dialysis while being on the transplant list. Since I demonstrated that I had a good, compliant attitude about being on dialysis, my doctors asked me to be a Patient Rep. on the center's QAPI Committee, which I still serve on. I represent all the dialysis patients and am able to voice our concerns. From there I was asked to be a PAC Rep. for the dialysis center and attended meetings with all the other members of the ESRD Network of New England, receiving lots of materials I could share with all the dialysis patients and giving them support. During that time the social worker and I started a dialysis support group, which has been up and down because the pandemic changed everything to doing things virtually, which didn't really work out for us. Now I am in two other virtual support groups, one from the ESRD Network and the other on rsnhope.com on Zoom. There are support groups out there, you just have to reach out to them. We've got a pretty good one going here! And you could look for walking or running groups in your area on days you are not on dialysis. I found I recovered enough on my days off to attempt outdoor activities. And is your work rewarding to you in terms of being with coworkers and helping other people? I found lots of reward in my volunteer work. Now that I have been lucky enough to receive a transplant life has changed again, but whatever adversity you face you can come out the other side by keeping on trying and knowing that others are supporting you!
Frankie I was on hemodialysis which is very hard on your body! I am now on Peritoneal dialysis which I do at night while sleeping. easy to set up yourself and no puncture. Not as tired and painful as hemodialysis. I would try it if I were you.
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