Alone out here

Sometimes it can be lonely out here in the world of dialysis.

Before I was sick, I was a really active and social kind of guy.  I was out most every night, doing something interesting and hanging out with many different groups of friends. 

Then suddenly you become chronically ill, and everything changes - and inevitably, you lose a lot of those "friends" you had.  It's funny, often when you're young, you KNOW that the "friends" you have are really more aquaintances and that the relationships and bonds you form are fleeting - but it becomes painfully obvious how true that is when the chips are down.

I did "loose" a few friends when I got sick.  I don't blame them, really - it's hard to be a friend to someone on dialysis at times.  People don't understand kidney disease, either.  People also want to hear "Yeah, I was sick but now I'm better...." and that's something you don't hear with kidney failure.  I can't tell you how many times I've been asked "So, how much longer do you have to do dialysis?"   And I always have to answer with something slightly morbid like "Until I die."  It's the truth, though.  This is it for me.

And yeah, I think that's hard for friends to take - and for family.  I know that it's hard for some members of my extended family.  There's a bit of an "ostrich with it's head in the sand" syndrome with them.  Everyone's aware, but often times I feel like they pretend it's not.  And sometimes that hurts.  I can't blame them - everyone's got their own issues, and I try to remain as concerned for theirs as I'd want them to be for mine.  But sometimes I want to scream "I'm sick as hell!  You have no idea how bad I feel day to day!"  I'm sick of hearing "You look good, what have you been doing?" 

"Not eating because I feel like crap!" 

or hearing whispers of "He doesn't look so bad......"  Yeah. That's because anytime you see me in public, it's when I feel decent enough to drag my carcass out of my house and off my chair.  And even then, I run out of steam real quick.  These days even more so - I feel like I'm moving through molasses every time I'm out and about.  I have trouble concentrating at times, because I'm just focused on staying conscious - sometimes I feel like I'm ignoring people, but I'm not.  I'm just wiped out.  Chances are, if you haven't seen or hung with me in a while, it's not because I've been doing anything awesome.  It's mostly because I've been doing nothing but sleeping or reading at home.

I am sick.  I'm also trying to live the best life that I can.  And, I do - I've still done some awesome and incredible things in spite of my lack of general health.  But every now and then, I need a little compassion and understanding.  Then again, I think everyone needs that -  I suppose that's where "the golden rule" comes in. 


~Steve