Hey all. Just letting 'stuff' out.

[TwistedKitten]

Kind of been a really bad month for me. Not really at dialysis, except for a few blows  .

A few things have hit me really hard this month, and I am at a loss as how to move forward. It seems I'm stuck in what I can only describe as a crippling depression. I don't know why it just hit me now but it did. I am the last of my family (immediate, not extended), no one but me is left . I also realized that as far back as I can remember I've watched ESRD slowly take my family away from me, and now I'm the one it seems is fighting a losing battle, and I find myself wondering why I should fight. In my head I know I have extended family who love me, and I love them. Very much. But my heart asks "why go on?".

Also, I find myself very angry at my Gran. So much so that I try and avoid her as much as possible. When my brother was in the hospital, which was quite a lot when I was younger. I stayed with her so my mom could be there for my brother. (Which I understand, he simply needed her there more than I needed her with me.) In any case, I stayed with my Gran during those times, and any time anything happened my Gran always told me that I shouldn't burden my mom with those things that were bothering me because she had enough to deal with because of Dan being in the hospital. After he died, it took so many many years for me and my mom to be close, and for me to talk to her. And I feel, because of what she always said to me, time was stolen away from me to be close to my mom. I think that had she not drilled that into my head all the time, I would have discovered much sooner what a wonderful friendship my mom and I could have had. And I am so angry at her, and hurting because I'm angry at her that I just don't want anything to do with her. I almost feel like I hate her for taking that time away from me.
At the end my mom was the best friend I'd ever had. and I miss her more than I can say. And I hate that I feel that way about my Gran.

These days to even wake up seems to much for me to take because I know that I'm my own family, and there isn't a damn thing I can do to prevent this disease from eventually killing me to. It sucks to say it but I am hopeless. As well as heartbroken, and nothing seems to matter.

How does someone move past all of that and actually live and not just survive?

  Just thought I'd get that off my chest. No one I know could possibly fathom what that is like for me. I figured though if anyone could it would be the people here.
So thanks for 'listening' to me.

Ciao bella's

[Jean]

Well, we may not be able to help, but we are all very good at listening. Sound like you really need some help with that depression honey. Don't let it hit you so hard. We have all had hard times in our lives, and we all eventually get thru it. You will too and life will look better to you. Good luck and God Bless and let us hear from you.

[TwistedKitten]

Well, we may not be able to help, but we are all very good at listening. Sound like you really need some help with that depression honey. Don't let it hit you so hard. We have all had hard times in our lives, and we all eventually get thru it. You will too and life will look better to you. Good luck and God Bless and let us hear from you.

Yeah I know. For me though, anti-depressants aren't an option. Every time I've been on them, different ones each time, I end up trying to kill myself. I'm tryin to get through this though. Like so many other things, it's just really hard.

[Rerun]

ESRD robs us of a normal life.  It robed you of a normal relationship with your Mother and brother.

It robed Gram of a daughter and grandson.  All she has left is you, and you her.  I know she would love to help you. 

Just remember you are sexy on the inside and outside.   

[TwistedKitten]

ESRD robs us of a normal life.  It robed you of a normal relationship with your Mother and brother.

It robed Gram of a daughter and grandson.  All she has left is you, and you her.  I know she would love to help you. 

Just remember you are sexy on the inside and outside.   

No, I'm not all my gran has left. She has 5 other children and a lot more grandchildren, as well as great-grandchildren. She has immediate family. My family is me. I'm my immediate family.

[Rerun]

That would be tough.  I at least have my sister, but she has her own family.  (Husband, kids and grandkids).  I live for my dog.  No one would know how to take care of her.  They don't know she likes to be covered up at night.  They don't know she likes a treat after breakfast and supper.

Who am I kidding!  She would kiss up to the next person until they were trained too!

                               

[KICKSTART]

Right , firstly you ARE depressed and do need some help with that ! (dont tell me the tablets make you want to kill yourself , thats the depression) Ive been there , got the t shirt , read some of my posts about this roller coaster we are on ! I have been depressed and believe it or not ,its not always a 'state of mind' .Kidney failure can cause an imbalance of chemicals in the brain resulting in depression. I was the same .. me take anti depressants ?..no thankyou! but i was persuaded and i was only on them for 6 weeks to restore the balance and wow i felt like a new person! Secondly you are still grieving , no one can tell you how long that will last , but while you are depressed you are just dwelling on it. I too am on my own and its only in the last few days that i have made contact with my mother again . My best friend of over 30 years has told me she is 'too busy to bother with me anymore' (long story)
I have gone 3 weeks or more at a time not seeing or speaking to anyone, but decided enough was enough! I have found a support group i can actually meet face to face, i have ventured out , walked round garden centres, had a coffee and just basically kicked my self up the backside!
You need to stop channeling your anger at your gran , it wont change things and wont make a difference , put that energy into more positive things.
Think of all the positive things in your life and concentrate on those and dont tell me there are none!
Im not sure of your age? , have you any pets? If not get one !!! Set yourself little goals to do each day, but just sitting every day saying im depressed and angry is so wasteful and draining.
Your IDH family is always here for you , but no one can make the changes for you. Start realistically with small targets , the first is treating that depression!

[paul.karen]

Pills PILLS pills, will fix everything that ails you.  What a load of BS IMO.

If i may.

First you have seen first hand what this disease does to people.  it has taken people that you were close to your family for gods sake.  So you have no reason not to get depressed and start to wonder why.  (this is no reason to take a magic pill as some would suggest).  Way before there were pills there was depression.  And it is a well known fact that some pills do make people think crazy thoughts.  it is just a small side effect (this pill may cause suicidal tendencies)  yeah i wouldn't take that pill.

As for your grandmother.  You dont owe her anything you are your own person.  If you feel the way you do that is your true feelings.  Maybe in time things will change but your aloud to feel like you do.  And maybe she did implant (unknowingly) some seeds in your head.  They say time heals all wounds so i wish you the best in the future with your extended family.
My extended family well my part of the family has always been the blacksheeps.  When my mother died NONE of her brothers and sisters called me to say or give condolences. Since i found IHD i have kinda reached out to some of my cousins and uncles through facebook.  havnt talked to them in many many years.  I got barley a response and none of them said sorry about your mom.  So my point is.  I have made it this long without any of them.  And i tried to reach out and i am done with them all.  By choice.  We owe nothing to anyone.  Time didnt help me so time goes on.

Know we all get and have bad days or even weeks now and again.
You have some pluses on your side to offset the negativity you are feeling.
You are young, you have a place to come and get opinions on how you are feeling and your alive even if it is with assistance from machines.

I wish you the very best.
We are human we are allowed to be depressed just like we are allowed to be happy it is an emotion not to be clouded with pills all the time.
Not saying pills dont have there place.

Do you have a significant other??
If you do this is reason to keep fighting.
And if not you will and you will be happy,  this also is reason to keep fighting.
 

[pamster42000]

Sorry to hear you are going through such a rough time. I am guessing you are having trouble sleeping at night by the time of your post. When I start thinking about all my daughter went through it keeps me awake at night also.  Well anyway my daughter, Sarah was diagnoised with a rare kidney disease at age six and was a dialysis patient at times in her life and had two transplants.
 I was the parent who was always with her when she was in the hospital, diallysis and dr. appointments. Like your Mom I had to decide to make arrangements for my two other childre..where to stay etc. After awhile it is just automatic...who to call, school, work, family etc.  I did miss out in things in their lives while they were growing up.

My other daughter,age 21,  I am very close too but my son age 19 is very quite and doesn't like to talk about things.  Family is just a state of mind. They don't have to be blood related to be family. One of Sarah friends considers me a Grandmother to his children. Just yesterday they had a little baby girl and they named her Sarah Rose, after my daughter's name. Also another friend of her's named his child Kennedy Rose.

There are stages in having end stage renal disease where you have to take life one day at a time. You just have to realize you will get through this difficult time and you will have wonderful days also.   

[Romona]

  I know in my family they didn't want to upset me with things because I was sick. It just made me feel more isolated. Your Gran meant well, but your Mom probably felt at times you didn't need her. I will be thinking about you!

[jbeany]

Twisted kitty, it's normal to feel depressed on dialysis.  We all have those moments, and sometimes they last for a very long time.  I don't think there's anything wrong with needing pills to help with it, but if they don't work well for you, there are other things to try.  A lot of studies have shown that regular exercise - at least 20 minutes a day, can have the same effect as taking an anti-depressant.  You'll have to force yourself to do it at first, but going for a walk every day that you can manage can do a lot for your mental health. 
Volunteering can also be good.  Doing something, anything, for someone else can leave you with a feel-good buzz that doesn't wear off quickly.  It can be something active, which helps with the exercise as well.  I volunteered to help coach a kid's t-ball team this summer.  It's been fun, and good exercise, too.  But it doesn't have to be even that active.  If you are crafty, think about making blankets for the Linus project, or clothes for premature babies.  If you are computer savvy, there are web sites that let you turn surfing time into charity donations.  If you have $50 to spare, you can get involved in micro-loans and help start a family business in a 3rd world country.

You've already acknowledged that you are not feeling happy, and that you want to do something to change it.  That is a huge first step right there!

As for your Gram - well, all I can offer you there is the mantra I have been repeating to myself since I started dialysis.  Repeat after me - "I can't change my family - I can't change my family - I can't change my family."  Your Gram may have been doing what she thought was best for her daughter, without realizing what the real impact was.  Maybe she was hoping that you would turn to her instead.  It's hard to fathom someone's thoughts when the whole family seems to be in crisis.  Try and let go of the anger if you can.

 

[TwistedKitten]

Thx. for your replies everyone. It's nice to get someone elses insight on something that is to close to you that you sometimes can't see clearly.

KICKSTART: First of all,it is the pills. It's been proven that sometimes the side effects are deadly. In my case the ONLY time I've ever tried to kill myself was on the pills. The only way I can describe how I felt when taking them is this. I was trapped inside myself. Kind of like being in a clear box watching what was happening to me. And no matter how hard I screamed I could change nothing. Outside everything seemed fine, I was happier etc. but inside it was just getting worse and I couldn't show it. I was trapped.    Over the years I've developed my own coping skills. And generally they work for me. We all have bad times. This just happens to me mine right now, and I think perfectly understandable considering my life. I'm actually surprised it didn't happen sooner for me. As for my Gran. I know the anger toward her won't change things. But it is what it is. And in time I'll work it out. Right now, I'm not ready too as it would involve confronting her, and that's not something I'm ready to do just yet. Though when I am my aunt is more than willing to be there to help me out with that. Pills aren't the be all end all. Oh, and I'm 23.


paul.karen: Thx for your post. It seems like you really understand where I'm at.  As for my extended family. Most are as they say 'too busy' to come around etc. Which I think is a bunch of BS cuz they could call even if it was a short call to at least let me know they were thinking about me and wondering how I was doing. In any case though, I do have some extended family that I just love. A couple of aunts and cousins, and an uncle who's a complete crack up . As well as my cousin's kids, who are 5 and 1 1/2. Who I find bring me SO much joy when I'm around them that I try to see them as much as possible. And no, I don't have a significant other, but I'll just have to wait and see what happens. but Thx.

pamster 42000: Yeah, I usually have trouble sleeping, but I've always been more of a night person anyways. I'm often up quite late. And I do realize that I'll have wonderful days too. And I have had some. Especially after I got my fistula. With the better dialysis I've been starting to feel like myself again. Even look like myself again. So I'm quite grateful for that at least, especially since with the  better cleaning I'm now 3 1/2 hours LOL. Anyways, I know for my Mom it was a hard choice to leave me with my Gran all the time, but my brother needed her. Even then I knew that, I also knew how much my mom loved me, even if she wasn't always around. We talked about that too later on. I think part of the reason I don't like or have much to do with most of my extended is because at that age, I think i was between 4 and 6, I heard some of them say that it wasn't right that she should leave me with my Gran so much and be at the hospital with Dan most of the time, and not see me. Even then, I knew that wasn't right. But they also didn't help much either, they could've picked me up when they went to go visit him.Though they rarely did. Excuses for that ran from she doesn't need to see that stuff , to saying that picking me up was just too far out of the way. Which it wasn't. But oh well. Like jbeany said. I can't change my family.

Romona: I think you're right about family and them not wanting to upset a person. I'm pretty sure that was part of it. Yeah, my Gran meant well, but you know what they say about good intentions. And yeah my Mom did feel at times that I didn't need her. And we talked alot about everything, those last few years we were very close, and she knew, because I told her alot. That I would always need her. And that was never more true than it is today.

jbeany: I don't think there's anything wrong with needing the pills either. It's not shameful as people used to think to need that kind of help for depression. I just know for me that is not really a good option. Yes, we could play around with finding one that didn't do that to me. But I'm not willing to take this risk and ultimately do something that would hurt the people I care for. So I've been trying to get myself out of this 'funk' by slowly kicking myself in the but to do things such as exercising for a bit everyday. So for it hasn't been everyday but, I gotta say to myself Start small, Rome wasn't built in a day, and that Change takes time. But eventually I'll get there. It's cliche but there are always gonna be bumps on the road.  Some times they are just some really big bumps. In any case thx for the other suggestions. It's really something to think about. Though I think I may have my own solution, that doesn't only help me out but my cousin as well, as she's kind of stressed out right now, so I can help her out by giving her some time to herself, and I  can help me out by taking care of her kids. Which always makes me feel good when I'm with them. So as they say it's a win-win. As for my Gran, you're right, I'm sure she was only doing what she thought was right. She isn't perfect. I'm working on my feelings toward her, and I'm talking to my aunt (which is huge for me as I tend to internalize things, Thx Grandma! *she said wryly*) which has helped. And that's a good mantra. I think I'll keep it.

Anyways, thank-you all for your various insights.
Some of what you have said I never thought of before, so THX.

Ciao Bella's

[okarol]

TK - All I can say is I hope things get better for you. 

[RichardMEL]

A couple of thoughts - some of which have already been covered. I know this is such a difficult struggle for you - and has been for such a long time it's almost become a fact of life and it must be so difficult to see where there might be any light or things to look forward to. Just to digress for a moment but they had some registrar pop by Dialysis yesterday and he spent an hour or so asking me questions, taking history blah blah blah (you see it's always me they put up because I'm about the only one that's lucid and can speak fluid English...) anyway he then asked if I was depressed and if I wanted to kill myself. I sort of looked at him and was instant with a negative on the second one, but on the first one... I mean he was looking for clinical depression I guess but I sort of thought it was a stupid question for someone suffering a chronic and terminal condition.. yeah mate life's totally peachy I don't have a care and I come here for the laughs and free dry cleaning service? Anyhoo back on to what matters - you!

About your Gran and her telling you to not bother your mom with things when she was dealing with Dan in the hospital - clearly she just had the best interests of her daughter in  mind. When my mother was alive I used to sometimes feel like I shouldn't tell her stuff on my mind because she always had my older brother and sister dumping their stuff on her and sometimes she'd have to listen for hours to them going on about this and that and I'd think "gee she doesn't need to hear about what's worrying me as well" - fully wel not thinking that perhaps it would worry her just as much if I was the "quiet one" who didn't say much and she'd worry about how I was anyway because I was one of her kids who she loved and cared about. Being a mother (or grandmother) can't be easy! Yet in a similar vein the family members thinking you shouldn't be left with Gran when you were young were thinking "why is she burdening Gran with looking after young TK all the time?" a different side of a similar coin if you will accept that phrase. Of course that also reflects a lack of understanding of the specific issues being faced by YOUR immediate family and the reasons for such actions - which is sad, but also common. I understand you resent your gran for missed opportunities with your mom, but also when you were younger you may have not been in the right place for such a close and rewarding relationship with your mom - specially when she was also busy with Dan. At any rate it's sort of irrelevant since what's happened has happened. You know Gran was trying to juggle the best interests of those she cares about... She wasn't trying to be nasty or hurtful to you I feel. It might be worth seeing her and just discussing these thoughts and feelings with her now that you're an adult. It may help to get things off your chest a bit and share... Perhaps the two of you can move to something positive like sharing your own thoughts about your mom....


Family can be funny. I have an uncle, he heads up a department at the hospital I am patient at and his son(so my cousin) is also a resident there(or was as far as I know). In the nearly 3 years I have been on dialysis in that hospital unit 3x a week, 5 hours I have seen either of them a total of ZERO times. Yep, can't even come down a few floors... that's the nature of the extended relationships in MY family! And these are medical professionals who understand what I'm dealing with there....

oops, again I digress.

I think the reality is that you need to seek professional help. I don't mean pills so much.. but I mean therapy of some kind to give you tools to help you deal with the serious and deep issues that you are facing and should NOT face alone. Get a referral to a counsellor or psychologist.. and that doesn't have to have a stigma attached to it - hell most people I know seem to see a shrink for something or other these days. What is important is that you find someone you can feel comfortable with that hopefully can help you through these dark times. There's no shame in seeking help and we all know being depressed/stressed/unhappy is going to have a negative effect on your physical well being as well as happiness.. I'm not saying you can just flick a switch and make it all bright and shiny.. of course not.. but perhaps, with proper help, you can find ways to focus on positive things like friends, hobbies, enjoying what you do away from dialysis and focusing on things other than medical problems - those are things that I know help ME keep sane.

You're in our thoughts.... 

[TwistedKitten]

RM: I understand my gran was only thinking of the best interests of her daughter...but what about my best interests? And what about them talking about the very difficult choices my mom had to make in front of me and saying she was making the wrong ones by being with her sick child who was in the hosp. all the time and leaving me with her?
And your right, when I was younger it would've been harder to have that type of relationship with my mom, but when I would've been ready to have that kind of relationship where she was not just my mother but also my friend. took longer BECAUSE of what my gran always told me. and to understand it all you'd have to know my gran. and yeah she always meant well. but it's not just that....my gran, is deeply religious....and i can't just tell her i don't want to talk about god and what he does because i'm so f'n angry at him too because then well....it'd be a bad situation. and i don't want to worry her more than she does. because yes i do love her.. i just can't be around her because she makes me want to scream because its always religion with her, and my faith died the moment my mom took her last breath. it's not something that is easily put into words, but gran doesn't understand why i'm so angry at god because the pastor was told by god (or so he says) that my mom and I would be healed in 7 days if he (the pastor) would call my mom that whole week to encourage her, and pray with her. which he didn't and as you know...she's dead and i'm still sick. so i'm angry at him too. but w/es. that's another thing altogether. in any case, i have ppl i trust that i can talk to if i choose to. and as for professionals, not a great track record there, they've either not believed me about what the anti-depressants were doing to me, or well..the one called me stupid and asked me why the hell i did the things i did. i realize they are not all the same...but it is what it is.

[willieandwinnie]

  TwistedKitten, is the best I can go at the moment. 

[Deanne]

 

I don't think there's anything wrong with being angry. You have the RIGHT to be angry. Your needs were put second. It caused long-term damage to your psyche. Granted, your Gradma was only trying to do what was right, but she was wrong. The adults in your life screwed up and you're left holding the pieces and trying to recover. I can't give you any advice about how to make it better, but if a tiny bit of validation helps......

[TwistedKitten]

Thx for the  w&w.

oddly enough a tiny bit of validaion does help Deanne. Thx.

[Hanify]

Oh TK I do feel for you.  What a rotten situation. All I would add is that you have to remember your Gran comes from an era where children really were put second.  That's how they were bought up.  They really believed it was best for children not to be involved in deep stuff.  It sounds like she was in a lose lose situation though, as were you.  I think you have every right to feeling p'd off, and I think talking about it is a great first step.  Eventually I believe you will forgive your Gran - but I'd be struggling with the religious stuff too if it were me.  I lost faith too when I was really sick.  I think because I didn't believe God would 'fix' me in that sense, I just found it was easier not to believe in God at all!  However, my faith did return.  The stuff with the paster is just rubbish.  I'm sorry, but I just don't believe God makes pacts with people dependant on how many times they call someone (or email or whatever goes round these days).  Keep posting.  Think about seeing a cousellor - they may have insights just like people on ihd do.  Thinking of you.

[RichardMEL]

Some good points here I think. I think whatever gran and your mother did wouldn't be "right" depending on what perspective you use. For example let's say mom struggled to keep you with her and look after Dan then probably she'd be accused of neglecting you(and/or Dan) or not having her priorities right. Same with Gran in a way who really had her family in mind.

The bottom line is right now, after the fact, it doesn't really matter about why and what. TK is left feeling alienated and like she's lost out and that's sad. Perhaps the focus should be on the things that make you happy in life - your friends for one. If you don't want to deal with your gran because of the issues you raised, which are very reasonable, then perhaps it is best to let that lie. I suppose my only thought in suggesting to sit with her and discuss how you feel about what's happened is that sharing those thoughts and feelings might be helpful to you to get them off your chest rather than having them bottled up inside festering away.. but in a way you've shared here and that would be a help I'm sure.

It's tragic that we can't undo things past sometimes... hindsight is a wonderful thing and I'm sure various parties would approach things differently if they had their time over again. Alas we can't.