I was diagnosed with IgA Nephropathy at the age of 29. Until that time I had shown no symptoms, other than during my second pregnancy when my OB/GYN kept prescribing antibiotics for urinary tract infections because my specimens always showed too much protein. I was 23 at that time. Toward the end of my pregnancy she sent me to a urologist, who found nothing wrong. Soon after my daughter was born I had x-rays of my kidneys done that showed "scarring" in both kidneys. I was then sent to a Nephrologist, who told me that it was likely nothing to worry about.
Fast forward a few years. I started having palpitations a lot, so I went to the doctor and had testing done on my heart. It was at that time that I learned I had high blood pressure. They did lab work, and a week later, I learned that I had already lost 40% of my kidney function. They had no idea why.
So back to the Nephrologist I went. I had a biopsy which confirmed my diagnosis of IgA Nephropathy. My doctor told me in a phone call that there was nothing I could really do to stop the damage, other than controlling my blood pressure (which was high because of my lost kidney function) and limit the amount of protein I ate. So for 13 years I did that. I saw my kidney doctors every year, tried to take good care of myself, but all the while my kidneys were deteriorating. It was a slow process. So slow, in fact, that I barely noticed my energy level waning. It wasn't until years had passed and I looked back over all the ways my lifestyle had changed that I realized just how big a toll CKD had taken on me.
A little more than two years ago, I spoke to my Nephrologist on the phone at work. She told me my GFR (Glomerular Filtration Rate) was at 10%, and that I should start planning to begin dialysis within the next few months. That was in October. By May I was scheduled for surgery to have my Peritoneal Dialysis catheter placed. By that time I had quit a very physically demanding job for a desk job. I was spending my entire weekends on the couch, too tired to even do housework.
After I had been doing dialysis treatments for about three months, I started having bursts of energy like I hadn't had in years. Is this what it's like to be normal? I wondered.
I have no idea what any other woman at my age is able to accomplish in one day before collapsing into an exhausted lump of aches and pains on the sofa. I have no idea what it would be like to wake up feeling "normal" and I have no idea how close to normal I am, even with dialysis.
There are some days when I think I could take on the world, and other days when I think my couch might swallow me up. Do other people who aren't sick have days like that? How often do they have those world conquering days versus those being eaten by the couch days? Where do I fall on the scale of average women at 45?
I suppose in reality, we all, sick or well, have to determine what "normal" is for ourselves and learn to accept whatever that means. For me it means a very active week, Monday-Friday and a very, almost sinfully lazy weekend. It means turning down invitations from friends because I'm just too darned tired to get dressed. It means worrying that the things I need to do will not get done. It means I have to learn how to be okay with my own pace of completing tasks and managing my life. Most of all, it means I have to stop comparing myself to other people who have bodies that function like they're supposed to. I am not like them and they are not like me. I am doing the best I can, just as they most likely are.
I am proud of myself on days when I accomplish ten million things before noon. I guilt myself on days when I've done nothing before noon. Somewhere in there, I know I need to find balance, but when a person so rarely wakes up feeling energized and empowered to take on the day, it's hard to put the brakes on. You don't know when you'll get another "good" day again.
Normal. Who really knows what it is anyway? Maybe "normal" people don't even know?
I definitely know I'm not doing myself any favors by trying to keep up with them, and I'm discounting all the effort and strength it takes for me to function as well as I do considering the obstacles I face.
If you're struggling through ESRD, you are as normal as you can be. Accept that about yourself, be proud of yourself for keeping on keeping on. Those of us who are living thanks to the help of a machine, after all, are probably the exception to normal.
