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Judy is a Lyme disease patient who has three children with Lyme disease. Jacob, the young man who inspired this article is a gifted musician and has won many fiddle competition awards.
Judy explains: "The article I sent you was one I wrote because after Jacob warned his tutor that if he pushed himself too much he would crash, and when he did crash, she told him he had planned to get sick. He was very hurt. He had just tried to educate her on the nature of the disease, only to be accused of a psychological reaction to his own expectations."
The Reality of Lyme Disease
by Judy ColemanDon't plan to be sick. Such easy words from those who can live every day to the fullest, and not experience the frustration of a chronic illness. Don't plan to be sick. Don't plan to be sick, even though you haven't been well for the past 10 years. You have been sick since the age of 4, only to get better, then get sick again. Every time you get better, you think this is the time that the sickness won't come back. This time the doctor knows what he is doing, this time you'll get the right medicine, and this nightmare will be forever gone. Then you can live like other people, and count on feeling well, and count on doing all the things other people do. But the nightmare returns again and again, and you find you can no longer trust your body, trust this disease, trust the doctor who knew he'd be able to fix you, because as soon as you trust, that trust is broken once more by pain and sickness returning. Don't plan to be sick.
One morning you wake up, and you feel an unusual feeling. You aren't sick. You tentatively put one foot on the floor, waiting for pain somewhere, and finding none, you stand on both feet. There is no familiar nausea, no head pain, your feet don't hurt, you stretch your arms and can feel both your hands. For the past several weeks you're health has been improving, but you never dreamed you could feel this good again. It has been slow, and the only way you realize how well you are now is by comparing where you were four weeks ago. This is the best you've felt in months, and you rejoice. After weeks of nausea and fatigue, you are elated. The new medication is working. The doctor finally knew what to do. You have been taking your medicine faithfully, doing exactly what you are supposed to do, and it has paid off. You are out from under this dragging illness. You feel light on your feet, and you feel like doing everything. You want to go outside, but you want to stay inside and do all the things you've been wanting to do. You feel a great surge of energy, and know that this is how other people feel all the time, and realize why you couldn't do the things you should be doing all the time, because now you have wellness to compare it to. This is what life is about. This is what every day should be. Your head is clear, it doesn't hurt. You can think, so you want to concentrate on something, just to remember how it feels to be in control of your mind. There is so much to do! You are happy. You are free. The world is a wonderful place. Life is great! Day two, is much the same, and you wonder how you could've just lain around all these weeks and months. The world has too much to offer to waste it lying around. Maybe you weren't really sick at all. Maybe you've just been depressed, and think you've been sick. You forget very quickly how it feels to be sick, because it feels so wonderful to be well. There are more things to do, and you make plans to do all the things you've been thinking about for months. There is no limit. Life is good. Day three, then day four, and day five, are all great, and you wonder again what made you lie around all that time. All those months of listlessness, were you really as sick as you thought? Why didn't you do all these things all this time? Go places, have fun, get caught up on your work. Laugh. Freedom. You barely glance at your old hangout, the couch, and you put away the comforter you always used.
" Not again, no never again, will I lie on that couch and be like I was before. I am a changed person. I am over this being sick thing. It's not going to happen. I am on the miracle drug. After l0 years of this, I will not let it return."
You are on a high, just from being able to do the things other people can always do. Week two, and lying on the couch is just a bad dream. You'll never be there again.
Day fifteen, you awaken, and feel the pain before you even move your head. The room spins, and you try to sit up. You shuffle to the bathroom, on aching feet and ankles. This can't be happening. It will go away, you know it will. This wasn't going to happen again. What did you do wrong? Did you forget your medicine? No. Did you not get enough rest? No, you've been careful. Could it be the flu? Yeah, the flu, that has to be it. It is unacceptable to think the whole nightmare is back. Day two, you awaken to the same symptoms, day three and day four are worse. It isn't the flu, or it would be gone. Oh, why couldn't it have been the flu? The flu would be welcome, but not this. This doesn't go away in a few days. This is familiar. Why did it come back? What have you done? Were you a bad person? Are you being punished for something? You didn't plan this, this return of symptoms, you didn't want this. Or did you? Maybe you knew that it couldn't last, so you set yourself up to get sick again? No, you didn't do that, you were much too busy and happy to think about it coming back. Weeks turn into months, and nobody understands, because there for a few weeks you were a normal functioning person. You don't understand why it had to come back. You realize you cannot trust your body, you cannot trust this disease, you cannnot trust your doctor to cure you, you cannot trust your family and friends to understand. Afterall, if you were well once, why isn't it happening again? Surely, it is something you've done wrong. And you are back down into the depths of the same old comforter on the couch, except this time, everyone is remembering what you were like when you were well, and by their accusing looks you know they can't understand why you just don't get up and act like you did before. .........................
Months later, you awaken one morning, to an unusual feeling. No nausea, no headpain, no spinning room, you tentatively take a step and your ankles don't hurt, you stretch your arms and can feel your hands. You remember another time, two times, three times, 28 times this has happened to you in the past l0 years, and you say to yourself, "I won't be tricked this time. This time I will not count on feeling well forever, I will not let my body trick me, the doctor trick me, and my family count on my feeling well again." Day two, and day three, all goes well, and when someone asks how you are feeling because they notice you are more active, you shy away from any proclamations about feeling well, as it will only make a fool of you. You know from the past 28 or is it 78 or is it 278 times, that it doesn't last, so you fill each day with as much as you sensibly can, enjoying each moment of this good time, and wait for the good time to be over, as it always is.
Weeks later, after feeling great, and on top of the world, you awaken one morning to nausea, head pain and a spinning room. You have quit kidding yourself. This isn't the flu. You knew to expect it, but you didn't plan it. No, you don't plan to be sick. You just know you can no longer count on being well. It is the reality of the disease. It is Lyme.