Not coping at all.

[Teepo18]

Hey guys,

Been a while since ive been on here but i think i need some support or something :S well to be honest im on the brink of packing it all in, i know ive only been doing it for 10 month buti just cant do it anymore. I hate every part of being alive and i know there are people who have it sooo much worse but i just cant. Its too much and even if all goes well with the transplant in the future its not gonna change much. I could get all sorts of cancers and diabetes and then the transplant will fail and who knows how many i will have to have. Im really concidering just stopping and being done with it. Not sure what to do anymore.

[okarol]

I have PM'd my phone number to you. I would like to talk to you, if you want to.
Please know we care very much and will help you however we can.
There's lots of support and hope here. Try not to project too far into the future, it can be overwhelming. 

[rsudock]

Oh Teepo18 I am so so sorry to hear you are feeling this way. It sucks to feel like you are looking up from the bottom of the pit of Hell. When I first started D I felt the same way too. As far as your fears about the transplant and getting cancer and all that...just take it one day at a time. Yes transplantation isn't a cure but it is a better option then D. They will also wean the amount of antirejection drugs you take so the chances of cancers etc... go down.  Everyday we are fighting a battle, putting one foot in front of the other. YOU CAN DO IT!!! Having a transplant and being on D now I will go through the risk of having a transplant again no second thought. Believing in you....

xo,
R

[boswife]

Sending you some hope, and strength, and comfort..  We certainly have our downs too, but im always glad we stuck it out.  I wish you well, and hang in here, do someore posting, and hopfully gather some strength from those who understand...   

[galvo]

I've been there Teepo and it ain't a pleasant place. No magic solutions, I'm afraid. All I could do was soldier on, one day at a time. The fog eventualy lifted. It may be suitable for you to try a bit of professional help (there's no stigma in that!).

Keep talking to us here. There's a lot of experienced helpful people hanging around.

[MooseMom]

First of all, don't add to your burden with this "other people are so much worse off than me" mindset because honestly, what other people are suffering through is irrelevant to you.  Other people's pain can't soothe you or help you make any sense of what is happening to you, so you can help yourself immediately by not comparing their pain to yours.

Second of all, transplantation brings its own can of worms, but if it didn't offer real hope for better health, people wouldn't be desperate for a new kidney.  Yes, there is an increased risk of cancer or other problems, but "increased risk" isn't equivalent to "certainty".  If you get into a car, you are at increased risk of death compared to just staying in bed for the day.  There is an increased probability that transplantation WILL be much better than D.

Lastly, regarding what to do next, well, you've already done it.  You've come to IHD in search for coping mechanisms, and if anyone can at least lead you in the right direction, it's IHD members.  I think the first thing to do is find out if you are clinically depressed; this is common and TREATABLE, but you will need to talk to a professional.  So, the next thing to do is to speak with your social worker and/or get an appointment with a therapist who is authorized to prescribe prescription meds if that's the route that's appropriate for you.

Taking life one day at a time is helpful, but it is all too easy to look into the future and wonder if you even want what you see, especially when the view is distorted by chronic illness.  No one wants to have a future filled with pain, illness, fear and uncertainty.  I struggle with those same feelings, and it is frightening and almost debilitating at times.

Can you tell us more about the things in your life that you enjoy?

[monrein]

Teepo, I read your post and wanted to jump through cyberspace to give you a hug and to sit down and chat for a while.  It's a frightening thing that we must deal with and it's especially hard when everyone else your age seems to have the world by the tail.  I totally agree with MM that you should consider talking to someone about depression and treatment to help with that.  It's also no coincidence that after 10 months things appear so wretched since you've made the necessary leap to D and somewhat getting used to it only to have it seem to stretch out forever in front of you with no relief in sight. 
What I want to tell you though is that even though transplant may seem like just another dreadful option, in my experience (I've been at this since 1980 and had kidney disease my whole life) it's the doorway to a much more normal life.  Hell, I feel better than lots of so called healthy people and I whine a lot less too.  It's really important though NOT to try to imagine what the next 20 years or so will look like.  It's easy to say take it one day at a time but hard to do if you feel discouraged and down but it's the only way to get through the tough times.  I also know that there are many people on D who do really well once they are being well dialyzed and figure out how to fit it in.  I did 5 years of it at one time and worked at a job where no one even knew that I was on D. 
However, the main thing is that YOUR feelings are really important and it would really be worth trying to find a professional (keep looking if the first one or ones seem useless) who can listen to you and help you to feel more hopeful and a bit more in control.  I hope you'll keep coming here too and talking to us about how you're managing.
I send you my strongest thoughts to find your own strength and to believe again in life and in what you have to offer to it.

[Rerun]

I hope it helps to say I UNDERSTAND!  I've felt that way many times.  And when I see someone WAY worse than ME I just say to myself "OMG Just shoot me".  But, I have to admit that I do well most of the time AND you transplant will make a huge difference (for the time).

You are a realist.  Yes, all those things you said about a transplant are true.  But, we are to take one day at a time and enjoy that day.

Hang in there.         

[Teepo18]

Thanks guys for your kind words. Well i managed to get up today thats a start lol, was dead certain on not going to dialysis today(12.30 slot) but i got a call to go in early so i went but mainly just so my mum wouldnt lecture me. She would prob go mad if she new i wasnt going to dialysis. I got an appointment tomorrow with my GP so we will see what she says. Lets hope i get carted off to the nutt house i dont think ill ever accept this but ah well im off out to go walk in the rain heh and then meet my bro for a few beers to cheer me up....

[renalpenguin]

Hey, I'm so sorry about everything you're going through. I've been there and it's not fun... Just wanted you to know you aren't the only younger person dealing with this!

I know it's really, really tough, but my advice is to hang in there. I pretty much went through the same thing as you... except I had a choice of transplant thrown in the mix, which I know a lot of people would jump at, but I wasn't sure.

I wasn't doing great on pd. I had only been on it two months and I could hardly walk... if I went to the grocery store with my mom, I'd ride around in a wheelchair, for example. I felt so sick all the time with almost no good days. Unlike you, I never considered stopping dialysis, mostly because I knew I was getting very sick very fast and it was only a matter of time even on dialysis (which was shocking to most people, the whole "you're not even 20 you should be doing okay" thing was very upsetting to my family and I, especially when told that by doctors!) My incredible cousin offered me a kidney and was a match, but I was very doubtful. Honestly, I waited until the day before he was flying out from California to decide this was what I wanted to do. At my lowest low, I figured what did I have to lose?  Well, I had almost every complication imaginable except for cancer, and the first month was really rough, including three seperate hospital stays... BUT it's been so worth it! Yes, I have side effects from the meds, but it's not nearly as bad as I thought. Yes, I got diabetes, but that's not as hard as I imagined... one extra medicine keeps my blood sugar in check; sometimes my sugar drops and my doctor says something like "Hey, go eat chocolate right now!" (the fact I can eat cheese again helps too lol) No, I'm not "normal" llike someone without CKD and that isn't going to change, but I went from feeling 10% of normal to feeling 80-90% normal! A couple of days ago I was in some store where they had a sample no-controller Wii game and a little boy playing with his mom needed an extra player... a transplant gave me the energy to help them out (and jump around in the middle of a packed store getting way too into some kid's game!)

It's got to be so hard right now, and I can't promise it will get better on dialysis because I wasn't on it long enough to say (though a lot of people says it does). A future transplant really should make it better. I'm five months out in three days- and I have to say it's amazing the difference a transplant makes (and I was one of those "no way am I getting a transplant ever! It's worse than dialysis" people- now I've got to be one of the biggest advocates there is- and this is after going through what my transplant center said was one of the "toughest cases we've ever had- and you're transplant number 1009").

I hope my style of "advice-support" didn't bother you! If it did I'm so sorry!

I'm praying for you!
 

[lou]

hey again adam! just send you a message and then saw this post from you and didn't realise quite how shitty you are feeling at the mo so sorry about that.

honestly things will get better. i wish we lived a bit closer cos i would say we should go for a drink one night (don't worry I'm not trying it on with you!  ) well if you ever come south a bit or i come up north a bit we should go for a pint!

this time last year i was feeling sooooooooooooooo crappy and depressed on d and one year later life couldn't be more different (have just booked a holiday in Portugal over Xmas!) yeah i know we will never be 100% perfectly healthy again like some people but i feel totally normal again and you still have your whole life ahead of you which will be amazing - this is just a bit of a crappy blip in it but something you can deal with.

anyway sending a big hug and hoping you are feeling a bit better today. 

lou x x x

[MooseMom]

Hey, teepo, I've been thinking about your post all day, and there's a couple of things that have gone through my mind.  I have a son who I'm guessing is about your age.  He lives in South London with his dad.  He has high-functioning autism, so like you, he has something in his life that he is going to have to always contend with.  As his mum, I worry a lot about his future, and I bet your mum worries about you, too.  There is nothing in this world that is more difficult than having to watch your child struggle with something as enormous as kidney failure or autism.   If you are continuing dialysis solely for the sake of your mum, well, in my world, that's a good enough reason.  We mum's don't like the idea of losing our children.

I was also mulling around in my mind the whole concept of "acceptance".  First of all, a disclaimer; I am not on D yet, but it is only a matter of time.  I've been watching my kidneys gradually fail for years, and I've not coped with it well at all.  I read a lot of posts from people here on IHD who are on D, and I don't know how they cope.  I really don't.  So many of them seem to accept it all with such grace and optimism and bravery, but I rant and rave and rail on and on and really struggle with my fury and resentment.  I am very far from graceful and optimistic and brave, I'll tell you what.  I don't think I've "accepted" anything, but if you scratch the surface, the very fact that I can get up and get dressed and continue living my life (even if it is just a day filled with domestic chores) shows that on some level, I have accepted some piece of my fate.  And you have, too.  The fact that you can go have a walk in the rain (something I loved to do when I lived in England...Chicago rainfall doesn't have the same soothing effect!) and go for a pint with your brother shows that you, too, have accepted something.  Stopping D altogether and allowing yourself to die is the true definition of non-acceptance, and I really don't think you are there, yet.

An important question...City or United?

[Desert Dancer]

Teepo, I've also been mulling your post all day and wondering what I can say that would help. I've concluded that everyone else has already said it better than I can, but here goes anyway.  There have been times in my life where I wanted nothing more than to pack it in and kiss this planet goodbye. There have been times in my life I've tried to facilitate the process. While I was living through those times I simply could not see past the present misery, and no one could convince me life would ever get any better.  It seemed utterly impossible at the time.

Now, however... now I get on my knees on a near-daily basis, thanking whatever powers-that-be for making sure I stayed put. Even as recently as 15 years ago I could never have imagined my life would turn out the way it has. It has taken turns I could have never foreseen, in directions I didn't even know existed back then. God, I would have missed so much!

There are far worse things than dialysis. At the risk of sounding like some rah-rah Suzy Sunshine, please believe me when I tell you your problems CAN be overcome - or at least beaten into submission - and you hold all the power.  Just please don't look so far ahead; the view becomes exponentially more distorted the farther into the future you look.  There are a thousand possible futures that have never occurred to you. 

*sigh* I wish I could reach out and squeeze you tight. This will have to do.  I am sending lots of positive thoughts your way.

[Teepo18]

Thanks everyone, its really helped with all your comments.

 I have been thinking about it alot today about the future and i guess i can just get on with it for a little while longer. I think im more afraid of the after effects of a transplant than anything. Diabetes and things like that :S if it was tablets for diabetes then maybe i could live with it but if u have to have them injections then no way. So ill prob have a talk about it all tomorrow at the doctors, see what they have to say. For now im just enjoying going out and being semi-normal. Its really weird that i dont feel ill at all O_O guess im lucky that way.

Thanks again everyone.

P.S United all the way even though i hate football with a passion lol

[MooseMom]

P.S United all the way even though i hate football with a passion lol

WHAT?  Are you the only British male who hates football?   I didn't think such creatures existed!!

Listen, come back tomorrow and post about what the docs have had to say.  Then we can continue this conversation, OK?

[Stoday]

WHAT?  Are you the only British male who hates football?   I didn't think such creatures existed!!

No he's not.  Me too!

[galvo]

Because Ipswich Town hasn't won anything since the flood.

[natnnnat]

Hi Teepo, just thinking about you, hoping you find your way to muddle through all this.   
Transplants are no picnic I guess, but Gregory says it was worth it.  And not everyone gets diabetes.
It seems we all wish we could just reach through the computer and make it alright for you, I do anyway. 
 

[Teepo18]

Lets hope im one of those that dont get it then could do with some good luck really!

Well been doctors and....... i kinda didnt tell em how i was feeling >.< i know i know i should have but its hard, im not good at spekaing to people about my feelings and stuff in person so i left it and just spoke to her about my eyes(constantly watering!) so i got some nice eye drops and some cream stuff cos i keep getting annoying spots! So yeah at least i got out of the house lol. Even went to my old employers and did some work for them....FOR FREE!....i was that bored lol plus i saw my bro(he works there). Hopefully ill get my old job back there. I think thats what it is thats causing me to be so down all the time, being bored at home all day. I need to get a job or do something.

So yeah thanks anyway guys. Im not too bad today, keeping ocupied kept me going! Hope your all ok too!

[MooseMom]

Hopefully ill get my old job back there. I think thats what it is thats causing me to be so down all the time, being bored at home all day. I need to get a job or do something.

So yeah thanks anyway guys. Im not too bad today, keeping ocupied kept me going! Hope your all ok too!

I think this is part of the answer for you.  You're bored and have no life outside of D and the house.  How are you physically feeling?  Is D at least making you well enough that you can work?  If so, go for it.  I know jobs are hard to get right now, but even if you just do some volunteering or something part-time, it has got to be better than brooding at home (I know because I'm a brooder myself).  So, maybe try that first, and if you find something to do that you like well enough but still feel really low, THEN go back to the doc and TELL HER how you are feeling.

Let us know how you get on, OK?  In the meantime, enjoy the weekend!

[Teepo18]

I feel fine i could do a marathon tomorrow lol. Im always walking about and stuff which is good. Would join the gym to keep me busy but im worried about messing up my permacath thingy :S but yeah going back to work today was fun even though i didnt get paid for it haha. We will see. Gonna try and get my job back there even if its only for a few hours. Need to think of something to do at the weekend. Got no money so cant go shopping or drinking heh so maybe just a wander or a dvd day after dialysis of course blah!

[natnnnat]

Well been doctors and....... i kinda didnt tell em how i was feeling >.< i know i know i should have but its hard, im not good at spekaing to people about my feelings and stuff in person so i left it and just spoke to her about my eyes(constantly watering!) so i got some nice eye drops and some cream stuff cos i keep getting annoying spots!

heeheehee that's exactly like Gregory.  He'll be half dying with pneumonia and the doctor will say, how are you feeling today?  And he'll say, "Alright!  Yeah, I feel pretty good today!"
And I'm like,
 

[RichardMEL]

G'day Teepo.

Like the others here I can appreciate how you're feeling and how hopeless and pointless it all seems at times, but what I do is try and focus on the positives and NOT on the what if's. I mean yes, I know that when I get a transplant (that's WHEN, not IF) it could reject, it could fail (well OK it will fail eventually), I could get diabetes, I could get some kind of secondary thing, or whatever... but just as much as I COULD get all that stuff... chances are just as much, and probably better, that I COULD NOT!! I'm willing to take the risks because I know that having a functioning kidney inside me, even if it's for six months or six years (or hopefully longer!) that will give me a much more normal lease on life and to be able to do what I want. And while the idea of diabetes and maybe insulin injections freaks the crap out of me (I am a big wuss and wouldn't enjoy stabbing myself)... just ignoring that perhaps any diabetes issues (again IF it happened, which is less likely than more) that frankly even if I had to learn to do that and deal with it, like thousands and thousands do every single day, that that is WAY better a situation than being hooked up to that machine for 15 hours a week!! Like I said though, I don't concentrate on what if's. My feeling is that I'll take my chances, and whatever happens, happens and I'll deal with it then.

Heck mate, you can go for a pint with your brother (and you have a gorgeous young lady offering drinks too ).. if you don't have many fluid restrictions then that's a positive you can focus on. Likewise, getting back into doing some work will keep your focus on positive things rather than just medical stuff. I am forever thankful that I can work pretty much full time. I enjoy that I can do that and spend time focusing on that and not dialysis. Being bored at home definitely can't help with how you're feeling.

It sounds like you're finding some positive things to work on and that's really good. Just don't pack it in - thank of your friends, family - your mum - who value having you around and would be pretty upset if you weren't!!!

Hang in there, and it's great that you came here to vent and seek some help - that's another positive step!!

 

[kitkatz]

My words of advice:
Take it one day at  time.
Do something fun very day for yourself.
Take time for you.
Contact friends and talk to people.
Come to IHD often and talk to us.

[Matt58044]

Teepo,

I'd just like to tell you that I'm a 26 year old male, currently on hemo (started a few months ago).  I had my first kidney transplant when I was barely 8 years old.

I can honestly say that I look forward to the day that I get a transplant and get my life back.  And why can I say that?  I've DONE it before.

For the past 18 years, I have been a perfectly normal functioning person.  In fact, unless I told people, they NEVER knew I had a kidney transplant.  Heck, the only way I even remembered half the time is because I had to take medicine in the morning and at night.  For 18 years the only damn way in which my kidney transplant affected me was that I had to take a minute in the morning and a minute in the night to take my medicine.  I did EVERYTHING that my friends did.  Played sports, drank alcohol, ate whatever I wanted, you name it, I did it. 

Beleive me, Teepo, there is a VERY good chance your life will be back to normal with a transplant.

And let me add this: My transplant wasn't a simple one - it involved a liver transplant at the same time! 

I know it's tough, I go through my "future doom and gloom" stuff as well.  But there has never been a time when I didn't think it would get better at SOME point.  Just try your best to tough it out, because you WILL have a brand new life some day, and hopefully sooner rather than later.