I don't usually respond to posts on Internet Lyme disease groups, because I don't have the time and have also needed to take a break from the "L" word. Every once in awhile, however, I peruse the groups to stay updated on how people are faring with the latest treatments, so that I can, in turn, provide this information to my readers.
Today, I came across a conversation on http://www.Lymenet.org which saddened me. I would have responded directly to the conversation, but I am not allowed to post on this group (probably for political reasons since I am the author of two Lyme books). That's OK. Rarely do I feel the need to answer someone on a Lyme disease group, but today I feel compelled to respond to this person's anguish.
So if you are reading this, my friend, I just want to tell you that I know what it's like to feel as though this disease has consumed your life. I know what it's like to wonder if your life will ever be about anything else but Borrelia. I know what it's like to feel as though you are being sucked into a vortex of Lyme thoughts, and no amount of clutching or clawing will get you out. And I know what it's like to beat yourself to a pulp for not being able to think about anything but Lyme.
It's easy to fall prey to desperation. Adequately treating this disease requires much time, energy, research and money. At times, it will take all of your brain power and all of your strength just to figure out what you must do to get through the day.
I don't blame you. I used to shed many tears over this disease, resenting how it had snatched my life out from under me, and wondering how to get out of the "Lyme disease" mentality.
I'm still trying to find my way out, but it becomes easier as I heal and am able to get out and do other things.
But the thing is, even in my sickest days, I sensed that what the doctor(s) had said in my book was accurate. That making Lyme the focus of my life wasn't beneficial for my healing. (Many of these doctors have been touched personally by Lyme, by the way).
Yes, to get well, I had to devote a lot of time and energy to research and treatments, and especially initially. At the same time, making every effort to incorporate other thoughts and activities into my life became vitally important, for my sanity and well-being. Such activities included watching funny movies, reading uplifting articles or novels that had nothing to do with Lyme, spending time in prayer to discipline my mind, and just doing anything and everything to keep all of my thoughts from being stayed on Lyme.
Being that Lyme tends to suck people into a vortex of obsession over treatment, trying to focus on other things can seem like a supernatural feat. Indeed, it may be the hardest thing that you will ever do as you heal. And if you are really, really sick, it may seem next to impossible.
Give yourself a break. There will be days, weeks, and months when you must research the next treatment, and it will take up huge chunks of your waking hours and thought patterns. It's OK.
Your whole life won't always be about Lyme, and even during the months, or years, when it is a primary focus, your life can yet be about other things.
It's incredibly difficult. I know. Desperation will cause you to cling to thoughts of Lyme. You want to be well NOW and so your mind becomes a treadmill of "what-can-I-do-to-heal?", running ever faster, to get to where you want to go.
It's hard to let those thoughts go. And it's hard to change, especially when you believe that you don't have the time, will or energy to think about anything else but Lyme, and your body reminds you every two seconds about how broken you are.
Healing is a constant tug-of-war between spending adequate time on treatments, and thinking on other things. But if you know that part of your healing involves creating a life outside of Lyme, however small, it becomes a tad easier to let the Lyme life go.
You can do it, my friend. Just take baby steps towards thinking on other things, and give yourself grace on the days when Lyme does take up the majority of your thought space. I believe that this will bring healing to not just your body, but also your spirit.