I don’t know how to approach you, what to say, what not to say. I want to be friendly, cheerful, optimistic. I want to be a valued asset in your life, even though I feel that I have absolutely nothing to offer. It was a beautiful and wonderful thing that you spent two hours sitting by my bed and visiting with me last weekend. A lovely and blessed gift from you to me, and I can’t imagine why. How am I worthy?
We talked of politics and whether Hillary would win, and basketball and when the coach would retire, and other such things. You said there was really no way to diagnose the recurrent pains in my left abdomen, and whether I was going to live or die. No one knows. And then you left. You paused before you went out the door and searched for words, for something to say. Finally, you settled on wishing me a safe journey. What else could you say?
I am terribly, terribly sick again. Nobody knows what myalgic encephalomyelitis is, or how to treat it. United States medicine is driven by Big Pharma but, in the case of myalgic encephalomyelitis, there is little or nothing that pharmaceuticals can do because the disease affects the nervous system and the immune system. The immune system pitches a fit whenever pharmaceuticals are introduced, so there’s nothing you can do to treat.
Medical schools only teach diseases where you can give medicine. Myalgic encephalomyelitis cannot be treated with medications, so physicians do not learn anything about how to treat these patients. There are alternatives but physicians won’t use them and insurance won’t pay for them. So here I lay, gently bleeding from several body orifices, and with nowhere to turn for help.
After three days and multiple phone calls from my physician, the director of the aide agency, and my Power of Attorney, the county nurse has increased my aide service from 12 hours per week to 20. Every time I get out of bed, I get worse. In England, there are people with myalgic encephalomyelitis who spend up to a year in hospital. I spent more than 104 days in hospital here but, since the staff knew nothing about the disease—and would not learn—it only made matters worse. Since the disease is in part neurological, I asked to see a neurologist. The hospitalist said, “You don’t have a brain tumor and you haven’t had a stroke, so you don’t need a neurologist.”
And so I am in despair. Where do I go now? What do I do? My glucose, which is supposed to be below 120 and has been averaging around 450, now is averaging around 525 and going over 600 every day. Additional blood work says I’m at extraordinarily high risk for a heart attack. I should pray God to be so kind.
I don’t know what is happening or will happen. I have no appetite but eat anyway; I lost eight pounds last month. I sleep or not; I never know which is going to happen.
I wake in the dark to go to the bathroom. Lurch unsteadily back to bed. Try to go back to sleep but am overwhelmed by the remembered horrors of 2013, when I spent eight months shuttling back and forth between the nursing home and the hospital. I press the button to raise the head of the bed, put on the LED lights, and try to write.
My aide will not be here for another two hours to bring me juice and coffee, then breakfast, then get me dressed to go to the doctor’s office, where he will do acupuncture and provide me a few hours of relief. I dread the trip. I cannot endure sitting up. Last time, I went by stretcher but that was awful, too. The Medicaid drivers placed the stretcher beside my bed and then just stood there and looked at me, waiting for me to move from bed to stretcher. I can’t. They wouldn’t help. They wheeled me down the hall, banging against the railing. They claimed they couldn’t get the stretcher into the elevators at either my apartment building or my doctor’s office building. They just stood there shrugging helplessly, making no attempt to find a solution to the problem.
Today I will try to travel by wheelchair, but it is torment. I am too tired to sit up. People with myalgic encephalomyelitis know this, but I have never met a fellow sufferer here, and no one in the medical profession knows anything about this. The acupuncture will provide sweet relief, but at what cost? Is it worth it?
The homeopaths will call this afternoon. They have, three times, prescribed too high a dose of the remedy, which has left me tormented by depression. They tell me I have to go through this, and they can give a follow-up remedy that will help me move through it. No, I don’t think so. To spend two or three days alone with acute depression? No. I won’t do it. Shit like that leads to suicide attempts and I won’t go there again. Committing suicide is not within my skill set, and attempting to do so only makes matters worse.
The flowers on my windowsill are dying. Lucky them. I used to go to the grocery store every Thursday and include flowers in my grocery purchases. I am now too sick to go shopping and there is no one to shop for me. I don’t know what is to become of me.
I will remain in my bed, be gently cared for by my kind aide, and then—hopefully—sleep a little. I will not go to the doctor’s. Yesterday I went to a different doctor and that is why I am in such despair today. I do so look forward to my morning juice and coffee but wonder what we will do when we run out.