Posted 10/10/2009 7:23 PM (GMT -6)
I'm new to this, too, and understand how overwhelming it can be. I know you didn't ask me, but I hope you won't be offended if I share some of the things that keep me sane:
-I have no reason to believe that Lyme and co-infection symptoms will worsen, so I choose to believe they will at worst stay the same, and at best improve or disappear. There are horror stories and success stories all over the place; I have decided mine will be a success story. Even if it turns out to be a horror story, at least thinking this way I have peace of mind right now and that's worth a lot.
-I've had this for a long time, maybe for most of my life. It gets bad and it backs off. When it's bad I make a point of remembering that it will back off again. That's difficult sometimes when I have a long bad period, but it helps me not to feel stuck in a terrible place.
-When I am having disturbing symptoms I look for physiological experiences that will distract me. Since I'm cold a lot, often that will be a warming experience (a fire, warm water foot bath, cleansing bath, having a heater or blow dryer pummel me with warm air, drinking a warm beverage). If you're hot, a cool compress on the back of your neck or on your forehead can be distracting, or put an ice cube in a baggie and use that to rub oil on your legs. Ahhhh. Sometimes I eat an intense-tasting food like olives or peanut butter. Or I do body brushing, or use a salt scrub on my skin, or rub my body with pleasant-smelling cream. I do not allow myself to focus on the symptoms because I cannot fix them by doing that, all I will do is become frightened and upset.
-I create peaceful moments for me alone, and for me with my loved ones. These are simple like lighting some candles and playing relaxing music, or reading aloud, or doing an art project. The point of these is to slow me down when my mind is racing. I've always been a worrier, and anxiety is always lurking. This is my way of intervening. It also allows me to share quality time at a pace that is realistic for me.
-The amount of information "out there" about Lyme and treatments is immense. I have chosen a few sources of information for the beginning of my Lyme journey. I keep meticulous notes about treatment alternatives, recommendations, and outcomes so that I can reference those easily when I am considering what step to take next. Once I have decided what course to take, having the notes lets me archive other ideas so that I don't lose track of them but also so that I don't need to be confused by them right now. If something isn't working I can always change course and having notes helps me decide what to do.
-I keep a diary about my treatments and symptoms. This way I can keep track of whether something is working or not. It also lets me express myself. It doesn't usually come out in my posts (I hope) but I am very angry that I went for so long to so many doctors without a correct diagnosis. The cost to me, my loved ones, my relationships, my career, financially, etc., etc. is huge. This anger buys me nothing but more misery, but I need to get it out somehow. The diary is a good place to do that, and who knows, maybe someday I'll do something with it. (publish it, burn it, send it to my doctors???)
Whatever I do in my life, it's better for me and for those I love if I can maintain a healing attitude. I learned this from my late husband who was sick for much of his adult life and who was desperately sick the for the last six years. He called his approach to living with a debilitating terminal illness positive denial. I can tell you that despite all of his medical problems, his illnesses were not the primary focus of his life and that he found a way to do the things he loved (albiet in an altered way) up until the day he went into the hospital for the last time.
I am so sorry that you are going through this. You've said things in your posts that have encouraged me and helped me to keep perspective. I am grateful for that. We're all here to help each other. It's great that you reached out. I hope that you will be able to find some peace of mind soon.