In my last post, I wrote that continuing to work while being symptomatic and while on hemodialysis provided structure, which was a major component of support for me.
Having a schedule which include taking meds, and where applicable going on dialysis, the time to eat, the time to drink,the time to inject epo, and similar “rituals” make up the fabric of a PKD patient’s life. These become so habitual that they aren’t even considered as something out of the ordinary. It’s just the way one lives.
This is “good” in the context of a PKD patient’s life. The more habitual the behavior, the less it needs to be thought about.
Yet, there is an “inner structure” of perception that we all have. PKD patients perform the listed behavior. But it makes a big difference in a patient’s well-being of how he/she perceives that behavior.
At the risk of perpetuating stereotypes, you can imagine that a young man of about 17, 18, or 19 might not be thrilled being dependent on medications, much less dialysis. Dependency doesn’t help his macho self-image. (Ask me how I know!)
Older people may have modified the need of appearing so invulnerable, as the “Odyssey” tends to humble those traveling on it.
So, what kind of “inner support structure” can one build to create some inner stability?
One is: attitude. Most of us, having asked the famous “Why me?” question have come to learn about the “Why not me?” question. There are many people with problems, physical, emotional, family, professional, financial, etc, etc. Who are you NOT to have some problems?
Without getting too religious, we all have our “crosses to bear.” At some point, we must come to accept our situation. When this comes, we stop looking outside ourselves for “pity,” and looking inside ourselves for self-pity.
This is a big step. When we accept ( and not be “resigned”) who we are and what we are all about, especially in relation to out disease, we can now move forward to “constructively engineer” our lives within the constraints of our disease and the “habitual behaviors” mentioned above.
In effect, you largely become your own source of support!
And as we travel along our Odyssey, and deal with the the bad (and the good), we move ahead as confidently as we can, doing what we need to do to construct the best quality of life as we can, to best of each our abilities, within our limitations and constraints!
I’ll see you down the Road!
Peace and Blessings!
Coach Richie Perl
Thanks for your comment. I’ve learned a long time ago that attitude is everything. There is a beautiful woman I met in dialysis who thinks life is not worth living because she is constrained to be living her life this way. I find I’m grateful to have a life to live. I am also grateful (being religious) that God watches over me and I am aware of it. Thanks again for your comment. Things could be much, much, worse.
Hi, Dianne!
Thanks for your comment.
I learned (I hope) the valuable lesson about the utilization of time. No one will do everything that what he/she wants
to do.
I noticed the time that was being, well, perhaps “wasted” is too strong, but let’s say, “underutilized.” We can’t judge how others use their time. All we can do is find some “passions” in our lives, and, within the constraints of our daily lives, pursue those passions…passionately!!
Peace and Blessings!
Coach Richie Perl