Feeling hopeless

[nog]

I'm still a bit away from D or transplant, but it sounds like it really does get worse, and I am dreading dialysis

i feel like it's not fair to have spent so much time dealing with all of this, pumping my body full of countless meds that ultimately have done nothing except make me sick and mess up my body even more, inside and out (PREDNISONE)

anyone i can talk to about it can't really empathize, tho i don't know why i would even expect them to able. i don't want pity, but i would like some understanding, some genuine sympathy, not just "oh man that sucks."

I feel like FSGS has defined my life and not the other way around, and the worst part is that I have no control
it's been a long six years, and arguably in the most formative at 16-22...
which is nothing in the lifelong commitment that my body has made

i just want everything to be better and be fine but i can't always believe in that

 

[RichardMEL]

Yep, I can relate to those feelings in a way. It would be so tough to go through all this as a teenager and beyond. I am sure you feel like your "normal" life has been stripped from you and you have to dea with this junk rather than worrying about "trivial" things like school, partying and finding a partner etc.

I wonder though, right now, if your biggest "enemy" is not so much the FSGS or the meds, but the *fear* of the unknown and what lies ahead? I mean you wrote that "it sounds like it really does get worse" - and I am NOT denying that things will get more complicated as you head down the CKD path, "worse" can be relative in my view.

Often attitude can shape how we relate to, and deal with, situations like this. Put simplistically if you think it's going to suck... well it probably will. I'm NOT saying if you think it's all going to be OK that you have nothing to worry about - not at all. However it doesn't have to be the torture chamber that perhaps you feel. Indeed many people adopt to living with dialysis fairly well, and of course you're young enough that transplant is a very viable options - who knows you may get a pre-emptive live donor or something and not have to deal with dialysis at all.  These things are all for thre future.

What *I* would be concentrating on now, in your situation, is living life to the fullest. Do all the things you want to do and can do before things like symptoms like anaemia and tiredness, etc take their toll(potentially) and even if you do wind up on dialysis obviously the restrictions that kind of thing will impose. You're young and otherwise probably pretty healthy. This is the time to get out and make the most of it.

I realise that reads like I am supporting your original comment that it "really does get worse" - no, I'm not saying that. I'm just saying that as you progress that there will be changes in lifestyle, diet etc that will follow - that's almost certain.

Also try to remember that at least with dialysis and the meds we, as kidney failure sufferers, at least have a method to keep us stable and able to live our lives. Others do not have this luxury. It doesn't have to be "the end" - more just a different phase.

I take great comfort and inspiration from folks on this board like Zach, Kitkatz and others, as well as RSN founder Lori Hartwell (who just got her FOURTH transplant!) that you can absolutely live life with kidney disease and make something of it.

Try and hang in there and don't let this stuff overtake your life!!! I'll tell you when I was hooked up to dialysis I did not see it as my life. I saw it as a way to support my life. I dialysed to live, not the other way around. When I wasn't on it it wasn't an issue. You're still some time off as you said... so yes you can prepare, but try to not let the fears and worries dominate your every waking moment.... apart from anything else that will just stress you out and raise your BP - not good for your remaining kidney function!

All the best and keep hanging out here and venting, asking questions etc - that's what we're here for!!

[looneytunes]

Nog, I think you've found the right place to talk to folks who really DO understand.  We have some young folks here like you who most likely have felt the same way.  I can also assure you that the caregivers out here (like me) also feel like it's unfair.  Our lives are disrupted because we care for someone who has kidney disease.  Age really is not relevant here, though (in my opinion  ).

My hubby retired at age 50 after working very hard for many years in order to retire young enough to live the life we dreamed of.  A few short months after he retired, he was diagnosed with ESRD, stage 5 and dialysis started just a few days later.  We had no clue that his kidney function was declining until that moment.  Our lives are much different than what we had before that diagnosis and definitely not what we had in mind for our youthful retirement.   But it's still a good life.  And though I think it's unfair that we were dealt this hand, I'll play it out and be thankful for every day we have together. 

So, I agree with RM.  Use the time you have before dialysis to LIVE life to the fullest extent you can.  Life after dialysis will come with some restrictions but it is not unbearable.  You may have to adapt, compromise, or change the way you do some things but as the saying goes, "where there's a will, there's a way." 

Don't give up hope, my friend.  Keep yourself as healthy as you can, there are rewards in that alone. 

[tyefly]

You guys are the best.....  great support..

[nog]

i have been in better spirits and decided to come read this again

  so much for the kind words and advice

i'm bothered because often my symptoms do interfere with living my life and having fun
i think what i do fear the most is that when i'm in the next stage i'm going to have to do a complete 180 with my lifestyle...

and as i understand my eligibility for being on a transplant list is dramatically decreased due to history of substance abuse 
so i'll have to cross my fingers for a living donor, or, that dialysis is fine and dandy...?


ohhhhhhhh just the thought of all of this, my insides and blood etc etc etc makes me panic and i wish i didn't have to think about it.
i don't know how to cope with this part.

[Gandalf]

Nog, I find sense in what RichardMEL is saying.  It probably sounds trite, but the road you are on really did seem hardest in the beginning to me - at that point one really does not know what to expect, and I also found I felt TOTALLY our of control of everything. 
As RichardMEL notes, maybe the issue is about living every day - in the Now as it were.   As one moves along, things generally become more comprehensible, and perhaps one becomes aware of one's own strength and capacity for dealing with the issues as they crop up.  When I read these posts, I am absolutely amazed at the fortitude and strength of so many of the care givers and the survivors of the D process!  It really gives me enormous encouragement. 
Please know that for sure, you are not alone.  This community is utterly amazing, and there is so much support and love just waiting to be shared.
Please take care.  You will be in my thoughts.

[RichardMEL]

Thank you Gandalf for your words of support

All i can relate is from my own experiences and how I have tried to approach things. I guess I was "lucky" in that I had plenty (years and years) of warning as to what was going to happen in the future, so I could plan a bit (eg: I got myself a place near the hospital I would be at to make trips to/from dialysis and potentially transplant stuff easier) and I think I had time to digest *some* of what it would mean for me (but as you say, the worst part was not really knowing exactly what it would mean - you can attend seminars, and hear people talk, and even read stuff here, but everyone's experiences and situations are a bit different, and there's just those undefineable things that shape the effects on each person) but one thing I did try and do when i was pre-dialysis is live while I could - because I knew I would face restrictions, specially from one of the things I love doing the most (travelling) that I did AS MUCH of that as possible while I could. I didn't know how it would work when I was on dialysis, or how long I would be "out of comission" for, so I tried to do all that I could. The other aspect of that was to not let this stuff get me down too much or not let it control my life. Even when I got to dialysis I tried to approach it in a positive way and yes, go and get hooked up, but when I left D to NOT let that be my life. I was able to work, see friends even do some domestic travelling etc. I did dialysis to live, not the other way around.).

It seems scary, and in many ways it is (I won't kid anyone that dialysis/ESRD is easy or that there won't be problems or that the restrictions can be a real PITA etc) but it is NOT the end of the world, or even the end of one's lifestyle. Changes will need to happen yes, but you CAN fit it in. Be positive. Be informed. Be proactive... don't let the disease own you. You own that sucker!!!

 

[rsudock]

Being new to dialysis I can say that it just takes time to adjust...what helps me is to let myself feel sad/bad and have a good cry, but then I plan something fun to do so I have something to look forward to. Over time you learn to adjust...are there still sad days? yes of course but there are good days too eventually...

xo,
R