I don’t know where to begin…

by Elouise

So I’m just going to blunder along for a bit. Which is, I’m told, the best way to begin. I think Eeyore would agree with me.

I’m a total novice when it comes to Chronic Kidney Disease (CKD). It wasn’t on my horizon and it isn’t in my family of origin.

But that doesn’t matter now. I have it. Stage 3A. In fact, I probably passed ‘Go’ well over a year ago without even knowing it.

So here I am. Floundering around, lurching through each day with emotional highs and lows, energy highs and lows, eating highs and lows, and little sense of overall wellbeing.

High means I’m upbeat, alert, happy to be alive, and at peace with my body. Giving happy hugs to D.

Low means I’m virtually asleep, can’t move a muscle including my brain, and don’t want to look at another healthy smoothie or make another easy-to-chew soup or stew. Weeping silently or openly. Collecting hugs from D as needed.

Do I feel sorry for myself? No, I don’t. Nor do I ask God, “Why me?” There are millions of us out there with this disease. What I regret is the relative invisibility of the disease—often until it’s too late.

Which raises the question of my status. You might think Stage 3A out of 5 stages is fairly decent. Answer: It is and it isn’t. It’s better than Stage 3B. That’s when you start talking about what’s coming in Stage 4 (preparation for the end game). Followed quickly by Stage 5 (dialysis, kidney transplant and, sooner or later, death).

At Stage 3A I have the possibility of leading a different yet fairly ‘normal’ life. That means constant attention to self-care, lab tests, and endless appointments with various doctors. Some people are able to reverse the progress of CKD, but it’s rare at Stage 3. Difficult but possible at Stage 2; often possible at Stage 1.

So what’s the solution? For me, I’m in a crash course I didn’t want. That means reading books, finding online resources, talking with family members, facing the reality that this is a terminal illness for which there is no magic pill. And of course, writing about it, especially about how I’m feeling.

It also means reordering each day as it progresses. Do I need to take a little nap? Meditate? Write my heart out? Do nothing but sit on the porch listening to the birds? Listen to music? Take a little walk? Have a good cry? A good rant?

This is an invisible disease. If you could see me, you probably wouldn’t know anything’s amiss. Most people without CKD haven’t heard much about it, think they won’t get it, or don’t know how to determine whether they’re at risk. Yet millions of us have it. Go figure.

I’ll post more from time to time. Not necessarily because you need to know, but because I want you to know and it helps immensely to write it out and make it public.

Thanks for visiting and reading!

© Elouise Renich Fraser, 1 May 2017
Image found at pinterest.com
Response to WordPress Daily Prompt: Apprentice