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  • Frustrated with unhealthy family members

    I have to vent. I'm 34 years old and have been on dialysis for a year now and have been entered in the transplant list. I was diagnosed with IGA Nephropathy 6 years ago and was told the disease SOMETIMES progressed to ESRD and when it did it would be something like 20 years before that happened. Unfortunately for me, my disease progressed in 5 years, and the multiple doctors I've seen have told me the progression or getting the disease was because of a fault of my own. It just happened, there wasn't anything I did or didn't do that caused it. Which is incredibly infuriating and frustrating. I've always eaten healthy, I used to exercise consistently and always took care of myself and my body so this is a huge blow.

    My parents have always been healthy people, they take care of themselves and get their routine medical checkups done, they eat healthily and exercise. They both live very healthy lifestyles. My in-laws, on the other hand, are some of the most unhealthy people. They never workout and they constantly eat junk. They are both obese. When I was diagnosed with CKD I tried to get them to make a lifestyle change and to understand how lucky they are to have normal lives. They've never listened. Now that I am on dialysis and my life has completely changed where I have so many food restrictions, traveling is harder, I'm EXHAUSTED all the time, etc I'm becoming very angry and resentful toward them. My father in law sent me a picture yesterday of a pizza joint that was holding a pizza eating contest, and he texted "I had to!" My immediate reaction was rage. I responded to his text saying in so many words that I was on dialysis and attached to a machine that is keeping me alive while he's eating whole pizzas??? Like, get a clue. You're wasting what could be a perfectly healthy body. And while I understand he can do whatever he pleases with his life, the lack of sensitivity around the fact that I don't have any control over my body is maddening. To clarify a few things both my father in law and mother in law are already exhibiting symptoms of heart disease, they also have family histories of heart disease, diabetes, stroke, and skin cancer. Yet they don't want to take the precautions they need or change their lifestyle.

    How is it possible for people that are close to me to not see how unfair this is and to appreciate what they have and will most certainly lose if they keep up their unhealthy lifestyle. I don't want to feel this way but I'm so angry at them. I'm starting to feel like I just don't want to even be around them. I love them both and they are both very nice people but the cluelessness and lack of perspective is killing me.

  • #2
    Wow. Sounds like you have some anger issues.

    Comment


    • #3
      dac0214 thanks for stating the obvious. I clearly posted I am feeling angry and frustrated. Do I like feeling that way? No, I don’t. But I thought I would post how I was feeling in what I thought would be a safe space, however judging by your comment you don’t think I deserve a voice? I’m generally frustated with people who live unhealthy lifestyles because I wasn’t so lucky to get the same kind of shot at life and it is just depressing to see people I care about not caring about their bodies while I wish I had healthy kidneys. I was dealt a pretty crappy hand and trying to manage as best I can. Something I feel like no one really talks much about is how being on dialysis affects people emotionally. Anger is an emotion and it is normal so I’m not going to apologize for feeling however I feel while dealing with something as major as dialysis, transplant and quiet honestly death.


      Again, I thought this forum was a safe space to express how I’m feeling or what is frustaring for me during all of this and maybe get some feedback from people in similar situations or feeling the same was as I am. But maybe that’s not the case.
      Last edited by corinabm1684; 06-12-2018, 09:28 PM.

      Comment


      • #4
        I can understand your anger. I have been on off dialysis since 1885 (two transplants). The diet is so hard and takes a long time to get used to. You need to not let your inlaws bother you -in one ear, out the other. You can only take care of yourself. You can not control what they eat and it sounds like they will never understand how lucky they are to have choices and a healthy body. I am sorry you have to go through this. Hang in there!!
        Last edited by raychel; 06-13-2018, 05:15 PM.

        Comment


        • #5
          I have PKD. I am very upset also with Family. My husband weighs 360 lbs.. He eats terrible, and is not willing to lose any weight to consider giving me a kidney... I am very disappointed and depressed about all of this. Not on dialysis yet. GFR is 20. I wish there was some type of support group. I feel very alone. Thanks- please keep negative comments to yourself. People can be so mean and heartless

          Comment


          • #6
            Hi Cynthia, I can understand your frustrations but hang in there. I have PKD as well with Dialysis right around the corner. Just place your focus on taking care of yourself, and don't worry about others. Is it possible that some of the anger you are feeling comes from being in a situation you didn't cause or have no control over? Sometimes I feel that way.
            Anyway take care of yourself, breath...😊

            Comment


            • #7
              Originally posted by corinabm1684 View Post
              I have to vent. I'm 34 years old and have been on dialysis for a year now and have been entered in the transplant list. I was diagnosed with IGA Nephropathy 6 years ago and was told the disease SOMETIMES progressed to ESRD and when it did it would be something like 20 years before that happened. Unfortunately for me, my disease progressed in 5 years, and the multiple doctors I've seen have told me the progression or getting the disease was because of a fault of my own. It just happened, there wasn't anything I did or didn't do that caused it. Which is incredibly infuriating and frustrating. I've always eaten healthy, I used to exercise consistently and always took care of myself and my body so this is a huge blow.

              My parents have always been healthy people, they take care of themselves and get their routine medical checkups done, they eat healthily and exercise. They both live very healthy lifestyles. My in-laws, on the other hand, are some of the most unhealthy people. They never workout and they constantly eat junk. They are both obese. When I was diagnosed with CKD I tried to get them to make a lifestyle change and to understand how lucky they are to have normal lives. They've never listened. Now that I am on dialysis and my life has completely changed where I have so many food restrictions, traveling is harder, I'm EXHAUSTED all the time, etc I'm becoming very angry and resentful toward them. My father in law sent me a picture yesterday of a pizza joint that was holding a pizza eating contest, and he texted "I had to!" My immediate reaction was rage. I responded to his text saying in so many words that I was on dialysis and attached to a machine that is keeping me alive while he's eating whole pizzas??? Like, get a clue. You're wasting what could be a perfectly healthy body. And while I understand he can do whatever he pleases with his life, the lack of sensitivity around the fact that I don't have any control over my body is maddening. To clarify a few things both my father in law and mother in law are already exhibiting symptoms of heart disease, they also have family histories of heart disease, diabetes, stroke, and skin cancer. Yet they don't want to take the precautions they need or change their lifestyle.

              How is it possible for people that are close to me to not see how unfair this is and to appreciate what they have and will most certainly lose if they keep up their unhealthy lifestyle. I don't want to feel this way but I'm so angry at them. I'm starting to feel like I just don't want to even be around them. I love them both and they are both very nice people but the cluelessness and lack of perspective is killing me.


              I'm sorry to hear about your frustrations.

              You mentioned in your post that you "don't have control over your body" but you most certainly do! You commented on changing your lifestyle and eating healthier.

              Do you still exercise? You said you did before, but are you still including in your life now? It's been shown that exercise helps clean the toxins from your body and relieve the kidney from doing so.

              I think its GREAT you're changing you diet...but western culture is not all going to change. People don't have "death" staring them in the face or hiding around the corner like we do. Honestly, it's what SAVED my life!! It gives you a special perspective and the motivation to continue eating healthy and exercising (or simply moving more).

              I would like to talk with you about your anger a little. This is totally normal, but I think you need to find the source. Is it coming more from the anger that you cannot eat these foods? Is it truly coming from a repulsiveness against those who don't eat healthy? Either way, find out where it is coming from and come to terms with it.

              You cannot change everyone in the world. If I had it my way, there would be no drive-throughs, but there's even more popping up. Do I hate everyone that go there? NO. You have to respect the choices of others and provide them with an example of how well you are doing while on dialysis and eating healthy and exercising.

              You are the example for others to see and (maybe) change their actions.

              Two more things. One, have you tried PD (peritoneal dialysis)? It is a whole different, and more free, form of Dialysis and allows you live a much more normal life? I was on PD for a year after my son was born and it allowed me to live normally - go to work, play with my son and even go on vacation. Check it out and ask your doctor.

              Lastly, I have CKD and my GFR is 15. I was on dialysis about 4 years ago for a year as mentioned above. After following a Paleo lifestyle and exercising 4 hours a week, I was able to get OFF DIALYSIS!!!! Yes, my kidneys still work at 15% however my lifestyle allows me to work around it. I am surrounded by people who make "bad" health choices, but I don't care. Let them worry about that later. I of course help those who ask!!

              You can check out my story here: https://www.experiencepaleo.com/my-struggle/

              I hope you come to terms with your anger. Anger can upset the balance in your body by messing with hormones. This can also affect health in a BIG way too. So please try not to worry about others, focus on yourself, and live a happy, fulfilling life because you DO have control over your body and you can still do amazing things!!

              Tanya

              Comment


              • #8
                Originally posted by thobson View Post



                I'm sorry to hear about your frustrations.

                You mentioned in your post that you "don't have control over your body" but you most certainly do! You commented on changing your lifestyle and eating healthier.

                Do you still exercise? You said you did before, but are you still including in your life now? It's been shown that exercise helps clean the toxins from your body and relieve the kidney from doing so.

                I think its GREAT you're changing you diet...but western culture is not all going to change. People don't have "death" staring them in the face or hiding around the corner like we do. Honestly, it's what SAVED my life!! It gives you a special perspective and the motivation to continue eating healthy and exercising (or simply moving more).

                I would like to talk with you about your anger a little. This is totally normal, but I think you need to find the source. Is it coming more from the anger that you cannot eat these foods? Is it truly coming from a repulsiveness against those who don't eat healthy? Either way, find out where it is coming from and come to terms with it.

                You cannot change everyone in the world. If I had it my way, there would be no drive-throughs, but there's even more popping up. Do I hate everyone that go there? NO. You have to respect the choices of others and provide them with an example of how well you are doing while on dialysis and eating healthy and exercising.

                You are the example for others to see and (maybe) change their actions.

                Two more things. One, have you tried PD (peritoneal dialysis)? It is a whole different, and more free, form of Dialysis and allows you live a much more normal life? I was on PD for a year after my son was born and it allowed me to live normally - go to work, play with my son and even go on vacation. Check it out and ask your doctor.

                Lastly, I have CKD and my GFR is 15. I was on dialysis about 4 years ago for a year as mentioned above. After following a Paleo lifestyle and exercising 4 hours a week, I was able to get OFF DIALYSIS!!!! Yes, my kidneys still work at 15% however my lifestyle allows me to work around it. I am surrounded by people who make "bad" health choices, but I don't care. Let them worry about that later. I of course help those who ask!!

                You can check out my story here: https://www.experiencepaleo.com/my-struggle/

                I hope you come to terms with your anger. Anger can upset the balance in your body by messing with hormones. This can also affect health in a BIG way too. So please try not to worry about others, focus on yourself, and live a happy, fulfilling life because you DO have control over your body and you can still do amazing things!!

                Tanya
                Thanks Tanya,

                I do still exercise as much as I can (been walking about 1 & 20 mins every day), my biggest issue is fatigue. It honestly is so bad that it really hinders my ability to workout like I used to (I practiced Boxing and Muay Thai for years and also used to ride my bike as a way of commuting). I do get dizzy more often than not even though my blood pressure is stable and normal, so biking in Philadelphia makes me a bit nervous... if I pass out from the heat in the middle of the street/traffic that'd be horrible. And I eat very healthy now and before I was even diagnosed with CKD and ended up on dialysis. I am currently on PD and waiting for a transplant, but even on PD while I agree it's SO much better for me than Hemo and with fewer restrictions, I still can't do a lot of the things I used to. I think for me it's more of a mental struggle than physical. For example, I know that I can travel on PD, but I work full time and when I get home all I have the energy for is heat up dinner and lay on the couch (which more often than not ends in me falling asleep). So the thought of having to plan a trip, get all the doctors notes to be able to travel with solutions and the machine, contacting Baxter 3 months in advance, contacting the hotel to get things shipped there, contacting the airline to give them a heads up about bringing the machine as a carry on, etc., it's just so mentally draining. On top of that, sometimes I wish I could JUST go to bed at night, instead I have to plan my whole day around hooking up to this machine. If I hook up 15min later than usual, that means I'll probably be a little late to work, I have to allow for time at night to do all the setup. It's just mentally and emotionally a lot. I'm 100% used to everything now, but the mental aspect of it and in a way being trapped in this situation is a lot.

                So, I think my anger is rooted in the fact that in a way I feel trapped or very restricted on a lot of things. Yes, I'm still alive and yes I probably have more freedom than people who are in hemo. Intellectually I understand these things and appreciate them but I can't help but feel angry at life in general because this just doesn't seem fair and at those people who just don't know what they have. And, I completely understand that people make their own choices, again intellectually I completely get this, but emotionally it's SO frustrating.

                From everyone's comments, it seems like the consensus is, just let them live their lives however they want, totally get it. I guess I'm just gonna have to figure out a way for that to not bother me. Thank you

                Comment


                • #9
                  Hi. I usually don't reply to these but I feel I can really relate to you. I'm 31, have total kidney failure, and have been on PD for almost a year. I've been on the transplant list for over a year, but because of confusion and new staff, I'm still fighting to be active on it. I've had type 1 diabetes since I was 9. I've been through numerous battles with disability, social security, and insurance agencies, and lost most of them, or had to settle for close to nothing. I have Gastroparesis, which causes me to throw up randomly. Because of this, my teeth deteriorated and insurance won't cover crowns I need on all of my teeth. They told me it would cost about $20,000 to get my entire mouth redone. I was diagnosed with Osteoporosis at age 25. I also have Fibromyalgia and Scoliosis. I'm in constant pain. I can't do water aerobics for therapy because of the PD catheter. There's much more than that, but I what I'm getting at is that I understand your frustration. My problems started at 9 years old when I couldn't control it. When my diabetes got worse, my kidneys failed faster. We can't control everything that happens to us. I also hate being chained to the machine. I can't go past the kitchen, and my parents have to make sure I have pop and water bottles in the fridge before they leave or go to bed because I can't reach the garage to get it. I feel helpless. I also feel as if I can't move out of my parents house. I call it my leash. I feel as if the machine controls my life. Being on it 10 hours a day, I've missed several occasions. I can't see my nieces and nephew because they live too far away and I don't want to try to travel with it. For me, dialysis is keeping me alive, but it isn't making me better. I'm one of the ones that simply just need a transplant. I'm in need of a pancreas and kidney transplant, so my donor needs to be deceased. I'm always tired, weak, and exhausted. I can't work, and the one thing I've ever loved to do is cook, and I can barely make dinner anymore. And when I do, it exhausts me for days afterward. I'm stuck in my home, and all of my relationships have suffered from my illnesses. You don't need to find a way not to let it bother you. It's ok to be frustrated. You just need to understand that some things we have control over, and some things we don't. And some people take life more seriously than others. Some people treat it as a gift, others play it like a game. And if they're already showing symptoms of disease, it just goes to show that their time of carelessness will either come to an end by a life cut short, or a reality check for fear of dying. But it is very inconsiderate to eat that way and shove it in your face. It's kind of like someone sending a picture of themselves getting completely drunk to a recovering alcoholic. Maybe they don't think about how those things will effect you. Maybe you could have a conversation with them. Just explain to them that you can't tell them to eat healthy or exercise, but if they're going continue to live that way, try to at least respect your lifestyle and what you need to be healthy. Does your spouse have an opinion on their lifestyle choices? I wish you well and I hope everything gets better for you.

                  Comment


                  • #10
                    Originally posted by foghorn View Post
                    Hi Cynthia, I can understand your frustrations but hang in there. I have PKD as well with Dialysis right around the corner. Just place your focus on taking care of yourself, and don't worry about others. Is it possible that some of the anger you are feeling comes from being in a situation you didn't cause or have no control over? Sometimes I feel that way.
                    Anyway take care of yourself, breath...😊
                    I'm CKD STAGE 3, I recently found out I'm not absorbing Magnesium, therefore my levels are low. Being low in magnesium, one of the side affects are being irritatable where once we could keep our comments to a minimum and let it roll of our back. With a low level of the mineral may be the reason for your anger. Get your blood levels checked to either get the meds you need to cope and take a deep breath. I know it isn't easy as I'm in a similar boat. Heck, I told off my doctor's cause they weren't moving fast enough or not organized enough, I since apologized to them but it was because my magnesium was very low. Normally, I'm very cooperative, friendly and easy going. But not when I'm down on vitamins and minerals. So get it checked and maybe that will help your anger. Take good care of yourself and God bless.

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