I think it's difficult for people to understand how CKD makes you want to just "give up." I don't mean harming yourself, not at all. But, when you feel exhausted and sore every day with no end in sight, you just want to give up. With a cold or a broken bone, you know you'll get over it soon. But, I've felt like this for about two years now. There comes a point where you wish there was just some end in sight.
I haven't felt like myself in a long time. I've forgotten what it was like to have energy and feel good. I've forgotten what it was like to not want to just sleep. Between the exhaustion, the pain, the weakness and forgetfulness, I've forgotten what I was like. I thought about it yesterday and I started to cry. I don't know if my wife understood. As great as she's been and as wonderful as my close friends have been, this is still a very lonely place to be.
Written by
Dustypye
To view profiles and participate in discussions please or .
Dusty: CKD sometimes gets frustrating. From my experience with CKD ( 2 years) I too had feelings of being hard to deal with the effects of CKD, but have adjusted to it and balanced things in lifestyle. I know do not have the energy to do some of the things I used to. Doubt will be hiking mountains anymore, but will stick to easy trails. Mathea Ford wrote a good book on adjusting to Kidney Disease which was helpful. Hang in there.
I totally hear you Dusty. I'm glad there are reading materials for us out there. I looked for Mathea Ford's book and found 16! All but one are pertaining to kidney disease and its challenges and what you can do to help yourself. I am also grateful for the NKF where I have found so much useful info after recently diagnosed with stage 3b. I have had spinal surgeries, foot surgeries and a thyroidectomy since 2011. Before the first surgery I was told I might have kidney disease, but I could only hear the surgeon telling me that I needed my degenerating, scoliotic spine fixed if I wanted to stay upright. I went back in my medical record and that year (2011) my gfr was already about 50. Now it's down to 30. Oops, guess I should have taken that seriously. It was only a couple months ago that one of my md's told me my labs didn't look so great and I'd better stop the ibuprofen. OK, now I know it's serious. I've seen the nephrologist. It's time to do what he tells me and learn as much as possible. His office called last week with an appt. for a kidney class, 1 of 2. Can't wait. I still have some energy and I plan to educate myself and listen to those who know, like you. Thank you for sharing.
I can relate Dusty. My PCM recently suggested I might need an antidepressant. Ok I am depressed when I feel awful with no relief coming. Between CKD and my other health issues I think some depression is expected? My husband is also a new kidney patient and feeling his mortality. I think I read that your work does not cut you any slack and that must be frustrating. Have you told us your kidney stage? Some medications can have bad side effects. Is your diet healthy and do you get exercise and sleep? Are you followed by Neprology? Sorry new here and trying to match names and posts. Take care Dusty 😀
I'm stage four CKD. I was born with only one kidney that's now down to 17%. I'm on a very low/no salt diet and medication. I do see a nephrologist and I'm on the transplant list. As for sleep, well, I can never seem to get enough of it. Usually I'd sleep all day Sunday, and that would give me the energy to make it through until Friday morning, then I'd get very tired. Now, I wear out around Wed. And, it's obvious that work wants me to just quit. No one ever talks to me and my boss is openly hostile to me. I've told them that I can't physically do everything I used to, yet, they still insist I do things like work an extra day and stand for 6 hours at a time outdoors. Every time I have to go to the doctor it's unpaid leave, and no one ever...EVER asks me how I'm doing or how the process is coming along. My boss even made the remark, "we want to make sure we're getting enough work out of you." As if to say, "we want to run you as much as we can before you die on us."
I can’t believe people’s attitude sometimes. I have to pray hard for people that just don’t get it. Like with depression many say “just pull up those boot straps and get out there”. When u have been healthy then have several things medically wrong it is hard but there is hope. Look up my friend instead in front and our dear Lord will guide our paths. Gosh that is hard to say too. Sometimes I ask God where r u in all this pain? Then He answers and says the same place I was when MY son died on the cross for u. He does love us and I know that but we still need to pray for each other and the pain u go through I know is so hard. U r in my prayers. Keep in touch🙏🏻🌈
You are so right Cathy! If I didn’t have my faith, don’t know where I’d be. I don’t know how people survive this disease without it! God didn’t promise to make everything “all better” , he promised never to leave us no matter what. It gets me thru😀😀
Hwy buddy, I can understand how you feel. I started with CKD stage 3, worsening every quarterly check, now down to 28%. Dont know where and when all this will end, feel weak and sleepy, am not my usual bright and active self any more. Diet restrictions and worry keep gnawing at me, especially as my father died of CKD a couple of years ago.
It took me almost 6 months to come to terms that I'm not going to live forever. I dont fall into the priority for transplants where I am, nor can I afford it, if they were. I went through increasing depression, then became highly irritable, harboured suicidal thoughts for some time. Presently, I'm focusing on kicking my smoking habit, trying to live well, and settle my finances etc, while I wait for my check ups.
Feel pretty worthless at times, but thankfully, refused anti depressives, now I'm scaling down my life plans and hope I will outlast those goals, but I really dont know and am OK with it.
My wife and son have been solid bricks, or I might have gone down by now. I also found lot of help on this forum and recommend that you stay and talk to us. Keep your chin up and I hope we will help each other for many more years
I completely understand. Stage 4 here, 18% function, on the list. Every damn day is an uphill struggle. Sisyphus has nothing on us.
My husband is mostly supportive; my manager is shocked I'm so sick because I still "don't look sick" most days. I went part time at work, and have started making small stupid mistakes recently. I'm worried to cut my hours any further now, since I have someone gunning for my job, and I have small kids.
We're fighting insurance now; the hospital is trying to come after us for the balance that insurance didn't cover, but I met deductible and insurance told us not to pay (it's well over $5k.) We had to lawyer up.
I see a therapist every 3 weeks, who of course is out of network but is so awesome, she's worth it. Anti anxiety meds and essential oils help a little. I also have some girlfriends that meet me at a fantastic dive sports bar with the best Jameson on crushed ice you've ever had when things get awful.
I want to be a normal, middle aged woman. This way of living is exhausting. I get wanting to just stop, but not mean end things. If we could take a vacation from CKD, it would be wonderful. So much of the rest of our lives is on hold.
Oh, I hear you about making stupid mistakes. I've been making a lot of those at work lately. It's almost like my boss is intentionally trying to trip me up or something.
Dustypye, I suffered severe depression when I was in my early 30's (I'm now 78), so at least I can appreciate your feelings. The only positive thing I can suggest is to see if you have a kidney support group in your area. It would be an "in-person" version of this site. It's kind of like an Alcoholics Anonymous group for a wide range of CKD patients, including some on dialysis. The groups usually meet in the evening once a month.
Hi Dustypye. Just like all the others have replied I agree. I have had CKD all my life. 2 kidney transplants & am trying to get on the list for a third. I worked but when the 1st kidney was giving up it was hard to work. I would come home & collaps. I was married no kids but he couldn't handle it. And a transplant is not a cure. Lots of other medical issues pop up which need taken care of. I went on disability. Then had 2nd transplant & just got fully involved in my church. I got a cat, Sophie who was my rock for 17 1/2yrs. She was why I went to dialysis & did what doctors said I had to do. I just had to put her down this past February & I have been lost. Very depressed & anti-depressants don't work with me. Now since my 2nd trans. started to give out 2 years ago & I'm back on dialysis it has become unbarible. I'm 56 yrs old, can't walk well, very tired and have been praying to God to just bring me home. I'm too much of a chicken to commit suicide or I can just stop dialysis & let nature take its course. So I know the feeling real well. Just a couple of suggestions; first your employer can't fire you because of an illness. That is discrimination & you can contact the Disability Act of America. Or a congress person in your home town. Try to get Medicare. They cover 80% then get a medicomp to cover the 20%. If you have outstanding bills make arrangements with the places you owe because as long as you are making an effort they cannot refuse. Hospitals & doctors double charge insurance companies so they can get what they charge so believe me they are not being cheated out of money. As suggested by another try to find a support group to go to & come back to here. This is where I come because we all might not be at the same level but we do know what we all are going thru. Like I said I've been sick all my life. I didn't think I would make it to 56 yrs old & I can't do this anymore. I am sooo tired & depressed. I can't remember the last time I was happy. For me it comes down to do you want eternal peace or to keep fighting until God says OK Denise I'm bringing you home now. I hope I said something that will help you & others. Try to stay strong & I keep everyone here in my prayers. Love & peace to all.
I like your post. We live with God as our hope and peace but we r also human. We hurt. We r tired at times. We want to play with our grandchildren or children. We want to just be and feel human. I trust God to help me with my faith and try not to complain but this is such a wonderful site to just let it out with no one judging or telling us to “just do it”. Just because u don’t look sick doesn’t mean u are not. Sure know about that. Living with depression for 30 years but have helped teens with depression due to knowing what it feels like and being able to tell them the truth. There is life after pain and peace after turmoil. God bless u all that r going thru so much. My heart and prayers r with u🙏🏻🌈
I can relate to your post my friend and I have been offered counselling but have not taken up that offer. As you know I have had CKD at stage 4 for 2.5 years and am down to my last 16%! It is really tough even to get up in the morning. Family and friends functions like weddings and parties have become a mission just to get through rather than a time for enjoyment. Even the ones that know I am ill still don't understand why I would not want to party. I too have had tears along the way. A year ago I had quite a public breakdown at work. I felt so awful.
We just have to take each day as it comes and thank the lord that we have got this great forum to talk to each other. I could not imagine what it would be like without you guys to compare notes with. Yet there are no doubt many poor souls out there who have no idea it even exists or don't have access to tech. I am sure you are going to have good and bad days as we all do with this but we just got to keep going.
Dusty...I am new here today and think it was no accident that your post was the first I read. I have multiple myeloma cancer and as a result have suffered kidney failure. I have been on dialysis for two years. Throughout my exhaustion and treatment, I have often thought, how would I possibly do this if I was still working. I am 70 and was lucky enough to at least be retired when my illness struck. I am not sure if it helps you, but please know that there are many people you've never even met who do know exactly how you feel...they know the exhaustion you're speaking about. And, sadly, they also understand the isolation you can feel even when family and friends do all they can. I read your later post about your workplace and I was outraged. I can't explain the indifference of some but I do believe they are in the minority. Please take care of yourself and forgive yourself for not being who you were. I do think some of the exhaustion might be depression and medication related. If you have a good doctor, ask about a change in meds. If you don't have a good doctor, ask friends and family to help you find one. It has been my experience that friends and family really do want to help...let them make the calls to find that one doctor who will listen. I have a great oncologist who has supported every thing I've tried...and one kind of "out of the box" things I tried was acupuncture. If you could find a practitioner, tell them your story, and ask about acupuncture to relieve exhaustion, it might help. Please know love and prayers surround you today...and, hey, if I should win the lotto...I will share!
Dustypye, I am so sadden by your thoughts of feeling tired & weal and in Pain & forgetfulness. I will share with you what has helped me with being tired, weak, and forgetfulness. I am 74 and my only kidney functions at 15%. Fortunely I don, have pain associated with my CKD however as I write the cardiologist recommended a battery of tests due to a high heart rate. The most important thing that we do for ourselves is research the potassium, phosphorus, protein, and we took added salt completely out of our diet, we cook everyday to maintain a healthy diet. We exercise everyday by riding our bikes, going to yoga, Pilates, and Barre classes. For my memory we play scrabble, feed wild animals, plant a small garden. Remember helping yourself also helps your wife’s diet. Plus, I mediate daily which helps to keep me focus on my breathe and myself. I wish you the best with these aggravation of CKD. Know that you are not your disease. I, wish they Medical profession would work on stem cell research to generate a new healthy kidney. I had considered a kidney transplant until I learn that The anti-rejection drug has the potential to cause CA. Take care and I am also here if you need more encouragement. Again, my best to you and your wife.
Hi hazel-hearty! Actually they are working on stem cell kidney rejuvenation as we speak. I believe they’re doing the research at Harvard. I do believe they are getting close to making things better for us. I too was on the transplant list but have since decided against it. I was always leary of the anti rejection drugs. Didn’t want to put that in my body. Yet I just followed along like a little lamb. Now, I’m choosing what I want. A bionic kidney is just on the horizon. I believe it will happen. Even if not for me, for others.
Hey Dustypye! I can totally relate to what you are going through; I was born with one kidney as well and haven't known what it is to be remotely healthy since I was 13 or so (I'm 20 now). It's a tough spot to be in and even now that I'm finishing up getting on the transplant list I'm stuck with a feeling that it's a never ending battle. I'm always tired and forgetting things and a lot of my friends and family members say "oh well just sleep it off" or "you'll be much better with a new kidney you'll see!" Especially since I've hit stage four 6-7 months ago I'm not bouncing back and it's frustrating to not be able to do as much as I used to. It's terrifying to not remember what all you used to be capable of or remember what it's like to eat/do whatever you pleased. I can't currently work and I'm slowly chipping away at my ability to go to school. My entire life, I've been able to count on my cognitive abilities and my love for learning but even that is slowly drifting away with my memory problems constant fatigue issues.
It's tough to keep up and even though people say that they understand, they don't understand 100% because they aren't going through it. I'm thankful that my family has been supportive and my boyfriend has come around as well. I recently found out that my kidney dropped to 15% and my family asked if there were any changes needed to be made to my diet, meds, etc so they could help me out.
It's still a struggle sometimes though because I have those moments where I want to give up and I'm seeing a counselor about my depression regarding the whole process. I'm still grieving about the loss of my kidney and needing a new one. I felt inadequate for a long time but my counselor is helping me to come to terms with my grief and to realize that my feelings are valid.
Your feelings are perfectly well founded. There's no reason why anyone in this situation wouldn't feel the way you do at least a little bit for some time. Your employer sounds like a horrible person with no regard for you. Take care.
I was accepted into a graduate program a few months ago, but, I'm having to put it off for now. I just can't work full-time and go to school on top of that. Also, like you, I forget things. Last week was an especially bad week for me mentally. I would forget things mid sentence and my hands kept shaking and I was constantly dropping things. I did (finally) get some rest this weekend, so, I feel a lot better today. But, I know that by Wed. my mind will be worn out and by Thursday my body will be worn out. Yes, I work in a really cool place and get to meet some great people, but, my co-workers are pretty awful. The only people who ask how I am are the cleaning lady and one of the part-time employees. The rest ignore me, or they just don't tell me things that help me do my job, effectively sabotaging me. I've been told that I'm not wanted here and my boss even told me that no one wants to even get to know me. I've never been anything but nice to these people. I just keep telling myself one things, it's become my mantra: "endure." That's all I have to do is endure. I know I'll get a transplant and I know I'll eventually be myself again. Until then, all I have to do is endure.
Your boss sounds like a complete a##hole. Find another job and/or file a harassment lawsuit. Statements like "my boss even told me that no one wants to even get to know me" are completely unnecessary and it sounds like they are harassing you into quitting. If they know you have a serious medical issue, this sounds like a form of discrimination. They should (legally) try to accommodate you. I would seriously talk to a lawyer if I were you.
You note you've been accepted into a graduate program program so it shows there are people who do not discriminate against CKD patients. As fas as your boss, it is against the law to discriminate (ADA), reasonable accommodations must be made: look into the ADA advocate in your community or at your workplace. I am CKD 4 and have been for many years, working full-time. If I need to sleep or nap I do it when I get home after work. I am monitored by my Nephrologist every 2 months, with bloodwork, and pay close attention to my diet. I am being worked up to be put on the transplant list. What keeps me from getting deeply depressed is (1) I talk with a counselor on a regular basis to maintain perspective, (2) I meditate, which reminds me to take things one day, one week, one month at a time, and so forth. Essentially everyone develops some kind of medical problem in the course of time; with CKD it's just that the current state-of-the-art for treating it does not offer many treatment options. You are not alone.
Well, I just found out that work plans on laying me off in December. I'm not suppose to know, but I found out. I've made no secret at all about my illness. This couldn't come at a worse time. 😥
Hi, I also had a very hard time when I reached stage 5, with fatigue, feeling horrible all the time, shortness of breath & dizziness. I think the worst part is that people do not understand and it is very frustrating. I also have other health concerns along with kidney disease...That being said I am now on dialysis and I find it really depressing and anxiety provoking. I cannot imagine how people go for years and years on dialysis, I feel like giving up at times but have a beautiful son and cat to live for. Again not hurting myself, just stopping dialysis. I continue to work along with this whole mess and I am really struggling. I am listed for transplant and actively looking for a living donor, but who knows when or if that will happen. Keep your head up, though I have had many complications with dialysis on my off days I do feel a bit better. Perhaps in time it will get easier, though I will never get used to it ! Take good care of yourself, watch your diet, drink plenty of water, try to get some exercise even if it is the very last thing you feel you can possibly do and do whatever else it takes to help you to feel better !! My thoughts are with you.
Morning Dustypye, first happy new year, it can be a good year.
I am in the Uk and we seem to have different approaches.
I was at stage3ckd 8 years ago , I thought my life had come to and end!!!!
I was and am still working full time and would not let this illness beat me.
I have progressed to CAPD, In centre HD, home HD and now nocturnal HHD.
On top of that I have been for 2 transplants that did not happen, all this is a large load to bear for yourself and immediate family.
I walk briskly 25 miles each week and cycle when I can, eat good food. My blood results are great.
Yesterday I felty so well I thought to myself I do not need this any more, this is a regular feeling but I know I must continue.
Have a positive outlook, work with your renal team and life can be good.
I volunteer when I can to talk with renal patients to encourage them, I give talks to those preparing for dialysis for my hospital, the good and the bad. We have a buddy system which helps.
This disease is huge and the general
Public have no understanding of it.
Please try to stay positive.
I am 72 and work 3 days a week now and do lots in the other days.
Preparing for a trip to Oz this summer to see my new granddaughter, life is good.
You are not alone in this journey my brother.. when you feel down it's not only you it is all of us.. together we will face this battle..I want to to thank the creator of this forum. we will pray for you my brother..
Hiya Dusty, I am a caregiver to aCKD sufferer, 2 transplanted and back on dialysis. My husband has shared the same kind of emotions, the mental and physical exhaustion, the loss of identity and the endlessness of it all. He was a Mountaineer before it all and fell sick at age 39! The fact is people don’t talk enough about CKD patients feel , the impact on their families and the constant sense of loss and guilt the CKD patient experiences. Not everyone’s transplant is a walk in the park nor does everyone experience dialysis the same way. In fact there is a lot of other things to deal with on the journey like maintaining a job , raising children and when you add financial difficulties and loss of friends who dropped off on the way .. it’s quite a journey. I learnt with my husband that it is important to speak your truth and tell it as it is. Enjoy the the days you feel good . Make fun and laugh at yourself when you can .. I appreciate that my husband shows how vulnerable he is and that he says sometimes he just wants to give up but at the same time he makes a grand effort to live each day to the fullest and is really a blessing on his good days !
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
eGFR moving up???
Meeting a Renal Dietitian
Keeping up with vaccinations.
Has anyone waited for dialysis with a gfr if 6
