On the borderlands

Lately I have been tired. I mean that tired that goes deep in the bone and interferes with thinking. There are reasons for this. My kidneys are border Stage V (meaning the GFR is 33). GFR is a test that shows how good the kidneys are working. GFR 35 is officially Stage V kidney disease.

I do a lot of things to keep my kidneys stable. I eat fresh food, distill my own water, and walk twice a day. Plus I watch my blood pressure and take pills to keep my blood pressure low. Low blood pressure can also cause tiredness and so can the pills.

Another part of my problem is my disease… I found the government is now calling it a condition… which considering calling it a condition is not accurate. It is a disease. At this point I am in stable condition, but only because I take chemo, rest when I need to, avoid viruses and colds, and large crowds. If there is an infectious disease in a crowd, it will find me. So all of these things are vital to keeping me stable. If I don’t do them, I find myself either on higher chemo like cychlophosphamide or in the hospital, which is even more dangerous for me.

The pills for keeping my immune system suppressed also cause this tiredness. Think of taking oral chemo for the rest of your life. Every time I take a pill, my stomach gets nauseous for an hour or two. It slows my walk. If I don’t take a pill the inflammation in my body can go unchecked. I have been to the point where every joint and muscle in my body hurt. Since I was not allowed to take a pain pill, I would put the pain way above ten.

So I am careful of all these things. I am walking a knife’s edge. Just the other day I was told that I should get a job like my last one. The last time I was stable I had a job as a Loan Officer over ten years ago. I was stable. My kidneys went to Stage V. My disease flared and I was on cychlophosphamide for six months. It took five years to get stable again. I was on prednisone for over ten years.

I have been off prednisone for almost two years. To be on prednisone that long causes damage to the muscles, how your body uses fat, and joints. Because of the medication, I now have fibromyalgia, gout, and other conditions. Because of the medication, I am losing teeth.

I took a long look in the mirror today. I could see why others think I am in perfectly good health. I really look good for a 54 year old woman. I even look younger than most. My signs of disease are not obvious. But they are there — the tiredness in the eyes and the bags under the same eyes.

I have dropped from exhaustion, like having my puppet strings cut. I didn’t know I was that tired.

I was reading that Flannery O’Connor also had a chronic illness, lupus. I had wondered where she got her inspiration when I read her in college. It was hard for me to get into her writings. Since I now have chronic systemic illness, I read her work differently.

She walked on the borderlands before me. I am walking them now.


4 thoughts on “On the borderlands

  1. Hang in there. I cannot put myself in your shoes but, until recently, lived with almost daily migraines for most of my life, so I understand the toll pain can take. We can look fine and still be ill. When it is not visible people tend not to take our complaints and limitations seriously.

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