What a mess I am!

[familyfirst]

Hi all,

Never really posted anything for myself or looked at any advice but I'm in such a mess, and don't know where to turn

Do any of you feel constantly guilty, I do because at times I feel sorry for myself...........which is ridiculous after it is my partner who is ill and I feel like a horrible person for thinking about myself!

My partner (31) had a transplant before we met, and it never occurred to me he could have health problems in the future nor did it matter as we fell in love quickly. 3 years later I became pregnant with our first gorgeous little girl and are problems soon began. At 7 months pregnant my partner had a AKI which killed him remaining kidney function meaning he was in and out of hospital and through the stress I decided to take my maternity leave early. He started PD which didn't work as his body was retaining the fluid meaning he became overloaded and back in hospital then he had to make the decision to start HD which he had been dead set against as it is more restricting. At this time he was also diagnosed with avascular necrosis (AV). He was in such a mess and constant pain, I was having to dress him (at 8 and a half month pregnant). He started his HD the day before we had a baby girl and spent the next few months so poorly I was honestly sure he was going to die. Me and my daughter also had a 2 week stay in hospital as she had an infection when she was born. I found it really difficult as he was hardly up to visiting and needed sleep and to throw up constantly (which I again felt guilty because I wanted him to be with me). We thought things were improving but they had taken him off his anti rejection meds as that was causing the AV and then 2 months later he went into rejection and stupidly I thought the operation to remove the kidney would be quite routine, which of course it wasn't. He was quite ill and also contracted pneumonia! after 3 weeks he came home. His HB level are so low they wanted to give him a transfusion but he wouldn't as his body would build up antibodies which could cause future problems for transplant (I am a match but due to BP problems in pregnancy and the fact we want more we are on hold until we finish our family - his sister has now stepped forward to donate). So after much improvement he started back work this week and I should be happy right?? but all I do is sit and think about how horrific it has all been and whenever our daughter is sleeping or I am alone I just sit and cry! then I feel guilty for being selfish when he has been through far worse than I have!

been to the doctors this morning and been referred for counselling but appointment not till July I just want to feel normal and enjoy my life again but im just miserable.

please tell me im not alone with all these conflicting feelings........................

[Michael Murphy]

Are you kidding me with what you  have been through you feel guilty.  Most people would have been reduced to a gibbering wreck by now.  You have become a mother and supported your partner and you feel guilty for feeling sorry for yourself.  Find some one to look after your daughter for a day and do something for yourself.  A spa day, a beach day, or even a quiet afternoon reading.  Look you have been taking care of your partner and your daughter,  this is something to be proud of.  But you can't keep this up forever without taking the time to care for the third person. You!  Please give your self a break you are dealing with a difficult series of problems and I think you have been doing your best for your husband and daughter.  But you can't keep taking from your emotional bank without occasional deposits of me time.  Please find a good support group others who deal with this can provide support.  The only thing else I can offer is that I will pray that you reach a understanding of how important you are and how good of a person you are!

[cassandra]

O sweetheart you, and your family have been through so much, I'm sorry to hear this. I agree with Michael that it would be good to be able to find some 'me' time. But please don't feel guilty about that. I'm the 'ill' one, my hubby went through the same kind of shock when I became ill, when loosing my kidney. Even though I told him from day one that it would happen. I don't think you can prepare for it anyway.

Have you rung the helpline from the NKF to find your local Kidney group? They could give you helpfull advice, and support. You don't have to be, or do everything alone.

Lots of strength, love, and luck, Cas

[Charlie B53]

"To thine own self be true."

Wise words.

It can be difficult to admit it, but you HAVE TO take care of yourself FIRST.  The responsibilities you have as a Wife and a new Mother are tremendous, but if you are not first taking care of yourself then everything else will fall apart.

Guilt?  Absolutely not.  You have a responsibility to take care of your own self so that you can be able to take care of your loved ones.  How can you feel guilty for that?

Think about having someone come in to baby sit so you can have a little time for yourself, either to stay at home and relax, or get out and do something that you haven't done in a while.  A little 'Me' time can be quite refreshing.

If you still feel guilty for taking 'Me' time then try volunteering at any Charity, Church, Hospital, or any organization that holds some interest to you.  That way you can have some sort of 'Me' time while still helping someone.  You can fulfill any inner urges to be 'needed' and yet still be away from your usual responsibilities as a Wife and Mother.

[SooMK]

Ah yes--guilt. What would we do without it? I'm reading a book where the author says "Olga doesn't do guilt". Wouldn't that be great for those of us who carry it around like a sack of potatoes? You have so much company. New motherhood alone is enough to require a support group but with all you've got going on there'd be something wrong with you if you weren't a wreck. I think any kind of support group--whether a new mother's group or a care taking group or a CKD support group--would allow you an opportunity to be heard and to vent until you have your one on one. I am a big fan of journaling. I suspect you have no idea what you are handling every single day. Just jot down quick notes on what you do everyday and I bet you'll be impressed with yourself. Write down your feelings and keep notes on that wonderful little girl, write down all the terrible things you think you did. I wish you and your husband so much luck going forward. The timing is terrible but I hope your load gets lighter and your life brighter every day.

[Deanne]

The name you chose for yourself, familyfirst, says a lot about you in itself. I think you weren't listening when the airline attendant said to put your own air mask on before helping others. I'm amazed that you're still able to speak coherently with everything you've been through. I see your burning desire to make sure your husband and daughter are ok, but what about you!? You can't help them if you don't take care of yourself first. You'll fall apart. It sounds like you're on the edge already. Your husband and daughter will be ok without you once in a while while you step back and get your much needed me-time.

I'm a patient and I think it's sometimes easier for the patients than it is for the caregivers. You have the hardest job I can imagine. Give yourself a break.

[Jean]

Oh heck Honey!!! I have been a caregiver twice in my life and I never want to do it again. Your job is the hardest of all. Dont feel guilty if you want a little time to yourself. In fact, don't feel guilty at all. And then you had your little girl and probably thought it would be nice to have some one pamper you and he couldn't because he was too sick, and you start to resent him. Dont let that happen to you, if you want to stay with him, no matter how sick he is, then do that, but dont feel guilty when it gets you down. Good thoughts and prayers coming your way from all of us.

[MooseMom]

Your post is reflective of a very common theme.  We often read posts from caregivers who end up running on nothing more than adrenaline fumes after a long spell of difficulty followed by a period of reasonable calm.  During that calm, many caregivers find themselves, for the first time, having the opportunity to take a breath and reflect on the hell they've been through.  Sometimes a caregiver is too busy to feel traumatized by events beyond their control and it's only during that period of calm that they understand and FEEL the effects of what they've been through.  It is entirely normal, quite common and not in the least bit selfish.  It's just life.

Do go and get some counseling when the opportunity arises.  At the very least, you can air out your feelings in a "safe place" and, with help, plot a path forward.  Having feelings is one thing.  How those feelings affect your life is something else.  If these feelings are making your life miserable, then you do need help of some sort, and I don't know if having a bunch of online acquaintences who you do not know tell you not to feel guilty is the remedy.

One thing I can tell you...guilt is self-imposed and self-sabotaging if it is undeserved.  It's also a bit self-indulgent, if I may say so.  You've done nothing wrong, nothing that has hurt anyone.  Quite the contrary. 

Good luck to you.  I hope better times are on the way.   

[familyfirst]

Hi all,

Thank you so much for letting me feel sorry for myself in a safe environment. I honestly felt better just by 'talking' about it. I find it hard to talk about with my partner as I don't want him to feel bad in anyway for my feelings! I know I am crazy!!

I have started a running group twice a week (as it happens it is on dialysis days so my mum has little one and I am not sat at home waiting and clock watching for when my other half gets home) I have also made contact with our local kidney charity to ask if I could put together a leaflet of some sort for partners/carers with a honest but helpful questions and info as I wish I had something to tell me what he was going to feel like and how it would effect me!

Thank you all for attending my pity party! and I wish you all the best of luck with any troubles you are currently going through!! xx

[graciekycats]

We are all in this together!  That is what friends are for.  Sometimes just venting here at IHD is like therapy.  But like everyone says you got to take time for yourself once in awhile. If you fall apart who will take care of you?  We like parties!

[Michael Murphy]

Anyone of the people here understand what you are going through, seven years ago I had six stents placed in my heart when I returned back to my room my wife came in to see me. To put it bluntly she looked like she was at the end of her rope.  While it was good to see her it was clear that the stress was effecting her.  One of the favorite thing my wife liked to do eas shop at the hospital thrift store.  I had a choice keep my wife with me or send her out to do something other than sitting waiting for me to die.  Three hours later she returned and was back to her usual self.  With dialysis I try to keep my wife buffered from the realities of Dialysis.  Taking time to unwind is not only good but it benefits not only you but with recharged batteries it benefits the people who need you.  If you let the stress cause you health issues who will mother your child or support your spouse.  Think of the time you spend taking care of your self as a way to make your other roles more effective.  Your letter was not a "pity  party" but simply a expression of your over all stress level.