Okay, I’d like to know something from those of you suffering with this kidney crap and your energy/motivation levels.
Most of the time I feel so slow and tired and unmotivated. I beat myself up about this and end up telling myself I’m just lazy. The problem lies there, how much of it is this disease and how much is me? I don’t know anymore!! I try and take advantage of the days I feel like I have more energy, and the days I don’t, I just feel so useless. I depend on my husband, I think way to much. Thank God for him! I get depressed. I’m way to content being at home with my loving pets, I feel like I’ve fallen into a pattern of just staying home. I do childcare (I have all my life) and I don’t feel like I have the energy to keep up, I haven’t had any kids since last year. I’m tired of my days being based on how I feel. I am waiting for that infamous phone call, for a Kidney/Pancreas transplant. I feel like my life is on hold!
I’m 44 and I know that is not old, I want my energy back! I just can’t help but feel like I am just wasting away. Is this Reality? Or have I really become lazy and useless?
Jules
How are your lab tests, especially your albumin (nutrition), your hemoglobin (anemia), and your dialysis adequacy (Kt/V)? If you’re malnourished, anemic, and/or uremic, you will feel tired and have little energy for activities.
Also, many people who are new to dialysis are depressed living with a chronic disease that requires treatment to live and a diet that limits fluids and some foods they enjoy. Patients who have coped with depression say they withdrew from activities and things they enjoyed. Some overcame depression by doing more with family and friends. Others got therapy and/or took antidepressant medications. Something else that helped was learning more about kidney disease and treatment (see http://www.kidneyschool.org), taking an active role in their care (PD is a great way to do that), and talking with other patients who had lived with kidney disease and PD. Posting to this website is one way to do that and I’m glad that you found us. Talk with your doctor and/or home training nurse about how you’re feeling physically and talk with the social worker about how you’re feeling emotionally and ask if there is a PD patient “mentor” you can talk with. I’d also ask your transplant center if you can talk with someone who has received a kidney/pancreas transplant too.
All my labs are good and I just did Kinetics, I’ve been anemic in the past but okay for right now, my A1C is good I even was at the Doc yesterday and saw the S.W. I have withdrawn from a lot of things I really am feeling fat and my body seems distorted anymore that is depressing in itself. I started PD in August of last year and I am now on the cycler. I have had Diabetes since I was 2 yrs old. over 42 years now. I am on anti depressants too. I really get tired easier now from what I think should be simple tasks. I always was a pretty active person. I have heard a lot about how you get so used to feeling bad that if and when you do get a transplant or better you really realize how bad you had felt. I have been babying myself trying to keep healthy for going into surgery, yet I am cautious on how hard I should work myself. I am very involved with my treatment, I don’t have anyone but myself that can be an advocte for me.
Hi J,
Are you doing any sort of exercise? With your doctor’s okay, getting some physical activity each week can make you feel better about your body, give you more energy, and even help ease depression.
It can be REALLY HARD to get motivated to do exercise, even when you know it’s the right thing to do. If you can make it into a social time with someone else or even a class full of folks, or do something that’s different for you, like yoga (which also helps to relieve stress), it might be just a teeny bit easier.
Think about checking out some of the free modules of Kidney School at http://www.kidneyschool.org. The Coping module can help you examine your feelings, the Sexuality and Fertility module has a lot of good info about body image, and the Staying Active module can help you think about how you might go about increasing your activity level. You can go through the modules “live” (they take about half an hour each & are tailored and interactive) or download the pdfs and read them. You might also want to check out the Nutrition and Fluids module, which has info for folks with diabetes who use PD. (Lots of good info & tips).
You have already taken the first step by reaching out to others and asking about their experiences. You’re on your way. Keep up the good work and you’ll help yourself to feel better.
You aren’t the only one that gets to feeling useless and lazy. I am 19 years old and have been on PD for a year now. I do have a lot of bad days, where I just lay around and play on the internet all day and feel useless. I don’t work. I am on disability. The only thing I really have going is that I’m a full-time college student. Other than that, I’m at home all the time, doing little to nothing. I get depressed too, bc…well…I’m 19 and can’t be a teenager…I feel like I’m missing out on a lot of life I should be living right now. This is a hard age to go through this, but I’m sure it is with ANY age.
I hope this makes you feel a little better. Just always remember that there’s always someone worse off than you. Things could always be worse. 
I know what you are saying, I know there are people worse off and that is part of what bothers me, I feel as though I could be doing something to help others. I do know what it is like to be your age with an illness and it is very hard. It takes a strong person to take this bull by the horns. I hope you have a loving supportive family and friends. It sucks to feel different, not normal, what ever that is supposed to be. One thing that is frustrating is that you look fine on the outside like there is nothing going on yet you are ill and weak at times, it is not written on your face. obvious like you would be if you had a broken arm or something like that. People do not understand. Everyone knows someone that is on dialysis or diabetic and they always tell you, especially when someone they knew has died from it. Why I don’t know. Where is the encouragement. I don’t know your circumstances, but you must be a strong person. J
Here’s my entire story, if you’d like to read it. My life just keeps getting worse and worse, yet I am still positive! And here is sort of a continuation; it’s about me trying to get a transplant. Enjoy!
Having worked with dialysis patients as a social worker since 1978, I saw hundreds of people start PD and hemodialysis. I encouraged them to expect it to take time for their body and mind to get use to kidney failure and dialysis. I also encouraged those that were working to keep their jobs if possible, even if it meant taking a medical leave of absence. I encouraged those that weren’t working to stay active with friends and families and consider taking a class or volunteering. As it sounds like you’re learning, withdrawing from previously enjoyed activities and focusing on how different you are now won’t help you feel better. You may need to plan and do things even when you don’t feel your best. If you’re like most people with a chronic illness, you will probably find that you feel better when you are doing activities you like because keeping busy takes your mind off your illness and how depressed you feel. It’s nice you’re on PD because you can schedule your treatment to fit your lifestyle instead of scheduling your life around your treatment, plus you can travel relatively easily.
Even though the article linked below was written for nurses, it may be helpful to learn from patients who had been on PD 4 to 13 years when they were interviewed for this study.
http://hdcn.com/anna_ce/316/316.pdf
We all have our sad stories and we all have times when we want other people to understand and empathise with our plight. I too am very low on energy and have been for a while. When I found out I had 20% function, I went into shock, and that and other circumstances in my life at the time sent me into depression. I didn’t even realize I was depressed, just thought I was declining. And I thrived on sympathy and telling my story. When I finally realized that I was making choices to be more miserable than I needed to be, I started making new choices, got a job, stopped focusing on myself, started focusing on others and gave God control of my future, wherever it leads me. I know He understands. Sometimes I talk about my illness because people want to know, I’m in stage 5, 14% funtion, preparing for dialysis, tired all the time, on the transplant list. But I try to make the choice to focus on what I’m thankful for: excellent medical advancements that have already prolonged my life 15 years beyond my mother’s age at death. I’m thankful for dialysis options for life that weren’t around when she died in 1966, I’m thankful that I have a family to care for and who cares for me, that I can get up and go to work and function on so little kidney function. I’m So thankful for sleep and the restoration that it brings and when I start dialysis, I will choose to be thankful for the life I have because of it.
I want to be an encouragement to people around me, not pulling them down into my misery. There are a lot of ways to choose to get beyond our circumstances even with low energy, write a letter to encourage a lonely person, pray for someone in need, send a little money to an orphanage, do something creative to give as a gift, a baby blanket, a card, a meal, whatever. I find that when I’m thinking of ways to give to someone else, my mind is off my own miseries.
PS I’m thankful for this site and Beth’s and Dori’s encouragement