Am I selfish: Hello - a lot of my fellow... - Kidney Disease

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Am I selfish

fartikins profile image
39 Replies

Hello - a lot of my fellow posters know I am going through a rough period at the moment. I had my review and I am stable but again more antibiotics cefalexin 4 x 250mg a day for 7 days. The amoxycillin gave me the most wicked headaches and I had to stop them. I take mannose and cranberry but I just cannot get rid of this infection and it has dragged me down - its hard. I just wanted to ask people about this - yet more agony piled on. My husband is my rock and I lean on him a lot because I am scared. Yesterday the family were told that Bob,s daughters cancer is now terminal and she has not got long to go. I am shocked to the core because she was always so well and positive. I just do not know how to handle this now. I spoke to my son yesterday to tell him and he was very harsh with me - he said I have to not think of myself now and to put myself on the back burner and not bring up any issues with Bob about myself - even though sometimes I feel so ill with this ckd and I am not to think about myself now so I can give Bob some space. Am I being selfish - I am ill as well but in a different context. I just feel so alone - I was shocked at the attitude of my son. He is a military man and quite hard but I am his mum and I need a little support. Life its so cruel and unfair. I just have myself now. Thanks for reading

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honeybug profile image
honeybug

Dearest fartikins 🤗♥️🥰🌿🌸🦋

No…. you’re not selfish nor are you alone. I for one have been so ill all of my life.

Was conditioned from birth to not complain and push through all illnesses regardless by mentally ill mother who hated me and a father who enabled her every whim.

That’s really alone.

I’ve collapsed onto the floor and hubby walked over me and left in the car as if I didn’t even exist to fend for myself. Happened decades ago.

I didn’t look sick so had to be faking for attention.

I’m soooo sorry you are suffering soooo much.

As for your son and hubby’s situation try giving Bob a lasting hug often to lend him support while being comforted yourself wrapped in his embrace.

They won’t know it’s to comfort you and they will feel your support of Bob by seeing you hugging 🤗 him.

Win win results.

I’m really sorry you’re having so much suffering.

I just discovered in January myself that I have CKD too. Wasn’t told this and I understand how scared you must be.

You should know HU members are here for you so you aren’t all alone. It just feels like it given your current situation.

Let me know how you’re doing. I’m very ill myself right now and vision is impaired but I will try to reply as soon as possible.

🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀

Best wishes and my sincerest sympathies for Bob’s daughter’s prognosis.

🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀🥀

I just said a special prayer for all of you.

Love and prayers

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

fartikins profile image
fartikins in reply to honeybug

Thank you so much for your uplifting reply - you talk to so many different people on this site who are impacted by this illness and I think most of the time because you don't look ill there is no empathy and understanding from loved ones. Perhaps it is the wrong thing to say but both cancer and esrd are final for you but in different ways and trying to put that message over to loved ones is nigh on impossible. Yes - it has been a tough life for me with many a traumatic event along the way and yes it is a test of my faith because you keep asking yourself what have I done. I will try the chicken broth and see how I get on. Again - many thanks.

honeybug profile image
honeybug in reply to fartikins

Sweetie you are most welcome. Chat anytime. I care about and love you.

Have been praying for you and your family for years now.

There’s always hope.

My mother hated me. I kept my faith and prayed one day she’d accept and love me despite hubby and so many others telling me to give up on her.

I took her to radiation chemo and throat surgery every 10 days for 18 months.

For the first time in my life she told me she loved me then slipped into a coma and died 5 days later.

Just 3 little words that mean the world to me now.

So never give up hun. You just keep being your best self. You know your true health/life story and that’s all that matters.

My mission while on this Earth is too comfort and support others because I lived most of my life without these essential things and don’t want anyone else to go through life without being validated and loved.

Love and prayers sweetie.

EJ ♥️🌿🌸🦋🤗🥰🙏🕊

fartikins profile image
fartikins in reply to honeybug

Thank you so much for your reply. You are truly an inspiration to everyone out there who needs comfort in their hour of need. I loved my mum to bits - she had quite a horrible life but I have never met anyone who can match her for her strength of character. She was a nurse who looked after disabled adults and children - which was her calling. I wish she was here now - I sometimes look for her but I can't feel her yet - perhaps that will happen one day. Please take care and look after yourself - ps I am English and proud of it.

honeybug profile image
honeybug in reply to fartikins

Thank you so much for your kind words. 🤗My ancestors came to the USA 🇺🇸 from the UKin the 1600s so I’m English too.

😍🤗🙏🕊🌿🌸🦋

Sophiebun11 profile image
Sophiebun11

Hi fartikins,

I know you are struggling with your health. My heart goes out to you.

I am happy that you have your husband to be your rock. When we have a chronic illness, we must realize that there are some people in our lives that simply don't have enough energy to support more than one person at a time.

Right now your husband's first concern is his daughter. Please realize that he is overwhelmed by his daughter's terminal illness. That doesn't negate how concerned he is for you but one human being can only be spread so thin. If his daughter is really near the end he needs to focus on her.

I am sorry if your son was blunt, but I too would know not to rely on someone dealing with your husband's situation with his daughter. He won't abandon your needs, but if you could try to reach out to someone else, or to others on this forum for moral support while your husband goes through this horrible time it would be a blessing to him. It would be a good change for you to be his rock during this time. It will make you realize how much strength you can bring to him after all he's done for you. All you need do is listen to his feelings and be there. He will be thankful for not having his daily issues to deal with on top of this new life and death situation.

I don't mean to hurt you, I'm just being a bit of a devil's advocate. I try not to burden people with my health concerns. I find it very hard to be around those who are always talking about their health issues when theirs are no worse than mine. I try to be there and set boundaries, when people don't respect boundaries I totally pull away. Let your rock have some much needed space for this brief time. He will love you for it.

You are lucky you have your rock. Many of us are alone. I have my kitty and he is a great comfort.

Best of luck. We are here for you.

Michael__S profile image
Michael__S

fartikins I don't think you are selfish otherwise you wouldn't be shocked by this terrible news at all.

From there it's difficult to tell and I could be misreading what you wrote. I know that I am not a very good active listener and I need to keep improving myself at it. I could call my sister to see how my niece is doing and end up spending most of the time talking about myself instead. Not that I wasn't asked how I was doing nor that I didn't wanted to talk about it but it wasn't the reason of my call. I would be lying if saying that purposively restraining myself was easy or natural. If it was about a family member in terminal phase it might just be among the toughest thing I had to do in the last 5 years and in my case it has more to do with my person than the disease. I am still fortunate to be in stage 3.

I really can't tell but maybe this is what your son meant. I don't know how the US military works as I am Canadian and it is quite a vast and varied institution. But by enlisting he chose to put his country before self, including his own comfort. It might be why he has strong emotion about it.

In my eyes the selfish person would be the one present with no other intent than to inherit of her money or possession.

Tuolumne profile image
Tuolumne

Absolutely NOT! This is not a zero-sum game. You being preoccupied with your health does not take anything away from what other people are suffering. If we play a game of "who has it worse?" then there is *always* someone who has it worse than you—does that mean that nobody is supposed to tend to their own health because someone, somewhere, is suffering more?

Of course, you should try to support Bob and the family as much as possible, but not at the expense of your own health. What possible good does that do?

I'm so sorry to hear about your troubles and you will be in my prayers.

fartikins profile image
fartikins in reply to Tuolumne

Thank you all for your replies. It is a difficult time for us all and I try to talk about things that will take his mind off what is happening. I hate baring my soul on line because essentially I am a private person but since I have developed this illness I have changed. He calls me Hermans Hermit because I don't go out much now. I also suffer with clinical depression and chronic insomnia - I don't sleep for more than 2 hours a night which is agony in itself. The medication I have been prescribed does not work anymore for me so I tend to rest a lot. I do hope fellow members understand - it is not easy but I will do my best. Thanks for reading

Citygirl76 profile image
Citygirl76 in reply to fartikins

Sending you so much love ❤❤❤❤

fartikins profile image
fartikins in reply to Citygirl76

Thanks

honeybug profile image
honeybug in reply to fartikins

Sweetie I understand about the Herman Hermits comment. The more my health declined the more insensitive family/hubby got.

He threatened to leave me one year. Saying I was faking.

Ohhhhh if others could only journey a short while inside our bodies how their perceptions would quickly change.

Once he went with me to doctors appointments he soon learned my plethora of 66 diagnoses was real.

He has been my rock ever since. However I spent about 42 years of 52+ enduring that kind of treatment from him.

Only endured it with my unwavering Faith.

It’s sooooo hard for others to see beyond the facade but there are countless people we pass by every day that look the picture of health and are dying.

I firmly believe that we should take others at face value.

Especially in this volatile world 🌎 we now live in.

You’re truly not alone.

Love and prayers sweetie.

EJ 🤝🥰🙏🕊

fartikins profile image
fartikins in reply to honeybug

Thank you

honeybug profile image
honeybug in reply to fartikins

Most welcome sweetie. 🥰

horsie63 profile image
horsie63 in reply to fartikins

I grew up in a military family, my dad was AF, I spent 4 years in the Army, my husband is retired AF, my brother was in the AF, my son in law so I understand how the military works. That said your son was out of line with his comment but it's possible he being male doesn't understand how to deal with emotion and/or illness. I doubt he was trying to be hurtful. Do you have anyone outside your family you can call and just chat with?

Jayhawker profile image
Jayhawker in reply to horsie63

A great idea to build a support group that includes family members as well as friends outside our families. That sort of varied and extensive support system would be invaluable.

Jayhawker

kellyscats1 profile image
kellyscats1

Your son is right. This is the time you need to give everything to your husband . Nothing is worse than the prespect of losing a child. He needs you...... be there for him righ now...You asked if you are being selfish... In my opinion you are.

Turtlepad513 profile image
Turtlepad513

You are not selfish. Just because his daughter is suffering, you shouldn’t have to compare or minimize your own.

Your husband may not be able to handle more than one at a time. Trying to be strong for others when you don’t feel strong yourself is hard and it hurts emotionally. You are not alone. The shock, anguish, and grief can be hard.

taiglum profile image
taiglum

Of course you're being bloody selfish. What the hell is wrong with you! Your husband needs your support right now. The man is losing his child and nothing is more tragic than that. Try to think about someone other than yourself once in a while!!!

Beachgirl32 profile image
Beachgirl32

Sorry you are going through this . Yes right now your husband is also going through a hard time about to lose his daughter and also I’m sure he is concern about you. Sorry your son talk to you like that I don’t think a lot of people understand chronic disease. And a lot of time depression goes with it I don’t know about if you are being selfish more than the depression entering the mix. With all you are going through you may need to see a therapist to help you there no Shame in seeing a therapist I did see one for almost 20 years it will give you someone else to talk to and I know it help me take some weight off my husband with constantly having to be the one to lift me up when I was going through my two brain surgeries I needed more support she really help me get through those chapters in my life. She help me so much with my pkd also.

fartikins profile image
fartikins in reply to Beachgirl32

Thank you for your lovely reply.

Jayhawker profile image
Jayhawker in reply to Beachgirl32

Excellent points and great suggestion.

Jayhawker

fartikins profile image
fartikins in reply to Jayhawker

Thank you for your kind reply

TopazForests profile image
TopazForests

No, you are not being selfish. Up until now, your husband has been your rock and he will continue to do so. At the same time you need to be a rock for him and it can be done. The first thing to do is talk to your husband and find out what he needs to get through this horrible stage of life. Children are meant to outlive their parents and when something causes this not to happen, it is difficult for everyone. Find out from his daughter and your husband what they need and then do what you can do. It's not selfish to be sick while she is battling cancer. Neither one of you chose the health path you are on. If you are not seeing a therapist, now may be a good time to start. Bob can still be your rock while you are his rock to get through his daughter's cancer.

RosemaryandThyme profile image
RosemaryandThyme

I am so sorry Fartikins. You are going through a terrible time right now. You must be under a tremendous amount of stress. While you can't do anything about your husband's daughter's illness you can do something to help yourself.For several years I had utis about once every 5 months. The doctor said each one was a new infection. This did not make sense to me. Why would I not have an infection for 70 plus years and then suddenly one every 5 months. My initial research supported what my doctor had said then I found a video by an Australian doctor who said that giving a low dose of antibiotics did not get rid of the bacteria that causes utis. The bacteria can burrow down into the layers of the bladder and are there ready to return if we get run down. He said doctors should give much stronger doses of antibiotics to kill off the bacteria once and for all.

For your kidney disease I had a fair amount of success using Lee Hall's book Stopping Kidney Disease. His whole foods, plant based diet raised my husband eGFR from 29 to 43 in about two or three years. I also found some good advice in the book How Not to Die by Dr. Michael Greger.

The research I did when trying to improve my husband's health told me that we have to be very careful what we put into our mouths. We have to eat as much of the good stuff and keep as many unhealthy and toxic foods (eg.GMOs) out of our system as possible.

I hope some of this helps you. Good luck and keep us informed.

fartikins profile image
fartikins in reply to RosemaryandThyme

Thank you so much for your kind reply.

chicablue profile image
chicablue

Dear Fartikins, No you are not being selfish. I have CKD and one of my greatest fears is getting a bladder infection that could ultimately wipe out my kidneys! You are very brave and I'm sorry you are going thru this. The only question is, I dont know if his daughter is married, or has other relatives for support besides her father? Or how old she is? It sounds like you don't have any other support other than your husband, and if he' s the only support for her also, this is hard on him. I am sorry your son wasnt more understanding!I only have one comment about your infection. I heard bacteria couldnt live in an alkaline bladder, and I was told to drink baking soda water instead of cranberry juice. My Dr said if I did that, I would also have to take a diuretic to remove some of the salt, I really didnt try it because diuretics keep me up all night going to the bathroom.

You have to think of your own health first. You are in a serious situation and dont need extra stress from others who are non-supportive! You are in my thoughts and prayers daily!

fartikins profile image
fartikins in reply to chicablue

Thanks for your kind reply

medway-lady profile image
medway-lady

I don't know what your GFR is but CKD can be mild or bad so its hard to say anything but with regard to the UTI ask about Hiprex and has your GP done a microbiology test to see if the bug is antibiotic resistant as some are. It would be best to find out and go from there. I can't say about your personal circumstances as we all se things differently and that can even vary on a day to day basis. So perhaps if you felt better you'd feel differently and the right treatment has to be sorted out but please look up Hiprex its worked for me.

RoxanneKidney profile image
RoxanneKidney

Yeah, I am in the habit of comparing everything to death. Like this CKD, it is not a death sentence. So back off and give Bob or whoever some space. Caregivers are usually running on empty. Don't push them over the edge. It is a fine line. You might think you are alone, but that is all relative now considering people have some real problems---facing death. You still have GOD to turn to. Get your Bible and read and say some prayers. I feel you and on the infection though. I pray you can get through that. But again, take your son's advice and back off the needy stuff. You even might find that focusing on someone else's problems will distract you from your own. Unfortunately, we can alll look around and find someone who is worse off. That sucks.

horsie63 profile image
horsie63 in reply to RoxanneKidney

You are right there. I was kind of "woe is me" then I talked to my friend and she lost her husband last week...He as feeling bad in Mar and Jun 19th he died. He had a rare abdominal cancer that even MD Anderson could do nothing for. He was a good man and my heart aches for my friend.

RoxanneKidney profile image
RoxanneKidney in reply to horsie63

sorry for that loss for your friend and you.

Sammi_n_Munk profile image
Sammi_n_Munk

Hi fartikins. I’m so sorry to hear about your husband’s daughter. As patients of CKD, a disease that is often misunderstood by many who don’t actually have to deal with it, we do tend to dwell on our own distresses much of the time (understandably so). And you having to handle an ongoing UTI as well, that can be truly spirit-crushing (been there, done that, believe me. The only difference is that in my case, it was an ongoing yeast infection).

Sometimes, we can feel very alone, especially when the focus of our loved ones and those we rely on for support seems to be shifted elsewhere for the time being. But always remember, you are not ever alone (especially within this community).

Sadly, your husband is losing his little girl, and he needs to be by her side as much as he can, for his own sake as well as hers. Unfortunately, he will require some space in order to fully come to terms with this. Please try not to view this as him turning his back on you. Rather, remain by his side, and offer him a strong shoulder to cry on. He will be needing that soon. He loves you, and will be completely there for you once again after he deals with this recent, and horrible turn of events.

Please don’t ever forget, that we are always here for you as well, and we do understand what you’re going through. We have so much in common with one another in this forum. It’s what we’re here for. To support each other, share our stories, and sometimes lend some wisdom from our own experiences.

I hope you find some peace very soon. You’re always in my thoughts and prayers. All my best to you, fartikins. God bless you. 🙏🌱🌿🙏

fartikins profile image
fartikins in reply to Sammi_n_Munk

Thank you so much for your uplifting reply.

Sammi_n_Munk profile image
Sammi_n_Munk in reply to fartikins

Also, in answer to your question: No. You’re absolutely NOT SELFISH. We’re people dealing with a chronic illness. We don’t exactly have it easy either. Don’t ever feel bad for feeling the rough effects of a disease. 🌱🌿🙏

fartikins profile image
fartikins in reply to Sammi_n_Munk

Thank you so much for your support

Bet117 profile image
Bet117NKF Ambassador

Faritikins, Your son is his own man now with his own issues.

It's not that he cares for you less, he is military and may have orders to attend to.

We all have family who are not always responsive and attentive as we wish they would be, that's why friends are so important.

After the holidays consider having a chat with your son and express your feelings; tell him what you need and in all fairness to him, listen to his response and negotiate how you can come together.

Family can disappoint us, but before you condemn, attempt to come to the middle and work out an equally agreeable communication plan.

I'll bet your son will tell you that he loves you.

B...

fartikins profile image
fartikins in reply to Bet117

Thanks - I know he loves me but I feel so lonely. After all it was only a year ago I was doing all these things myself - now it is all so different.

Bet117 profile image
Bet117NKF Ambassador in reply to fartikins

Dear Faritkins,

I can understand the feelings of disappointment and abandonment that you have spoken about.

Your son does love you, I guarantee, but you don't know what responsibilities the military have put upon him in these difficult times.

When you feel this way, pray for him; that he is well and safe one of life's greatest gifts that a parent can give to a child.

Go to search at the top of this page. There should be a phone number which can lead you to a peer mentor. Someone who is willing to talk to you when you are feeling discouraged. Take a look.

Moderation team names and partner are listed at the bottom of this page. Click on them and send them a private chat. They should have the number to call in the UK.

Welcome to the National Kidney Foundation's Community for people affected by Chronic Kidney Disease (CKD)!

Read more about Kidney Disease

kidney.org/

1-855-653-2273

kidney.org/peers

Take care of yourself...and pray for your son..

B....

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