Coping

I have been feeling pretty good lately. Oh shit did I just jinx myself?
I’ve been consistently active lately. That’s why I’ve been feeling ok.

My definition of good, when I say I’m feeling good, probably differs from yours. There are days that I get out of bed and my legs tell me what kind of day I’m going to have. If my legs feel like I have bags of cement tied to them it means that I’m not off to a good start but all hope is not lost. It is those days that I expend all the mental energy that I can muster to make it through whatever I need to do. Errands, etc. If I have nothing that I need to do, I sigh in relief. I used to beat myself up over the do nothing days but I’ve given myself a break. I have limitations and sometimes I can’t come out to play.

A day when my legs feel good are the days that I almost, I can’t stress the almost enough here, feel normal. I hate that word don’t you? It means that I have some spoons in the drawer and that I have a limited amount of time to do something that requires me to go out in the world and be among people. The drawer could run out of spoons at any time and I needed to be near a bench when the spoons were gone. There will be days when I go strong. On those days I overdo it without exception. There is nothing to be gained in overdoing it because the next day I will certainly suffer. Cramps, fatigue and a general largess will leave me sofa-bound for sure. But I will smile a bit knowing that I did something that day.

One of the hardest things I’ve ever had to admit to myself is that I am sick. Sick isn’t always visible. That’s because we don’t want you to see. We want to look normal. We smile through pain and push on when our bodies beg us to stop. I always thought I was special. I thought that I could fake my way through feeling the effects of Chronic Kidney Disease. I couldn’t. I later thought that I could endure dialysis without experiencing the effects that others do. I couldn’t. So I was forced to admit, in addition to being sick, that I am in fact deteriorating. Deteriorating to the point that I fear it is not long before I’m unable to do the things that make me happy and keep me sane.
This has been haunting me.

So many people have told me to be strong, that I have so much to live for. This I once tragically forgot momentarily and almost made the mistake of all mistakes. But it is now at the forefront of my brain, the knowledge that to end my life would cause a lot of pain for some people. I don’t have that in me. The thoughts of seeing 4 weddings, welcoming grand babies into the family, listening to music, and doing every possible activity that puts a smile on my face do indeed give me something to live for. But…my brain constantly screams at me that the most important thing to me needs to be quality of life.

It’s not selfish despite the obvious implications. Milestones in life are awesome, but the pain is still there while you’re waiting for them to happen. I’m wiped out, my hands are cramping, I stopped feeling sensation in my feet about 3 hours ago (Did I mention that I now have Neuropathy?),my legs are swollen from the knee down and my dialysis port on my left forearm is throbbing. It’s unlikely that I will sleep tonight and when 3 AM rolls around it will be me and the pain and exhaustion. Trust me, at that hour in that condition the last fucking thing you are thinking about is giving away brides and bouncing a baby on your knee. It is the witching hour and the dark thoughts fight for dominance.
I wish nights like that on nobody, not my worst sworn enemy.

All that aside, with the exception of the occasional bouts of insomnia, I’ve been out in the world and accomplishing things. I’ve been running a successful little side business cleaning cars. It kicks the crap out of me almost every time but it’s good money.
I bought a brand new Harley Road King. It is the bike I’ve always wanted. When I ride I have a smile from ear to ear on my face.
We may be getting a place in Florida. I have the opportunity to stay down there all winter should I want to. That has been giving me hope to carry on.
I have a fairly active love life right now. 3 women who are actually interested in me. Problem is that I still want the married one and I’m willing to wait and see what happens. She certainly gives me a reason to look on the bright side.

It’s been a hard road back from my fall from grace. But there have been some lessons learned and coping mechanisms formed. For now at least I’m on a good road.

But the pain is still there…