This post by guest blogger Jennifer Crystal has also appeared here. Jennifer is an alum of NeuWrite Boston.
Last year at this time, I wrote a post about New Year’s being a sort of mockery for patients with chronic illness: each day of suffering is much like the one before, and we cannot simply resolve to get well with the change of the calendar, the way we can resolve to lose weight or drink less coffee. So much of our convalescence is arbitrary.
For Lymies especially, we often can’t say how our energy will be one day to the next; even taking all of our medication correctly can make us feel worse before better. Spirochetes, like cancer cells, can replicate and burrow deep within our bodies and brains, despite our best efforts to fight them. Despite our will to stop them. One of the most frustrating aspects of living with chronic illness is not being able to control what is happening to your own body.
When I first got sick, I vacillated between the classic fight or flight responses to my situation. At first I thought I could ward off reality with a “mind-over-matter” mentality. I insisted on working at summer camp despite the fact that I had a serious case of mono; I drove back to Colorado after camp, willing myself to be well enough to ski that season; years later, after long-term treatment for tick-borne diseases, I moved to Vermont as soon as I got my PICC line out, sure that my determination would be enough to see me through any hiccups I encountered.
Each of these decisions landed me back in bed, sicker than before. Resolve and will and determination and a positive attitude were not enough to combat an aggressive physical infection.
Other times, when frustration got the best of me, I’d throw up my hands and think, what does it matter anyway? Why not stay up so late that I become too agitated to sleep, read and write so much that my neurological symptoms flare with electric intensity, skip my nap to have a bleary-eyed visit with a friend? I remember telling one friend, “Sometimes I feel like my life is a movie. What will happen next?” I figured that even if I didn’t take care of myself, even if I pushed myself beyond my limits, eventually it would have to work out, right?
Wrong. There was no script calling for someone or something to swoop in and save me. My life was not scheduled to get better in a neat little 120-minute package. I was the one writing the script. It was up to me to decide if eventually things would work out.
Of course, there were parts of my illness that I could not control; there were the actual bacterial and parasitic infections that could only be treated with intense antibiotic, anti-malarial and adjunct therapies.
But there was another part that was up to me. After my serious relapse in 2007—following the failed move to Vermont—a friend told me that he was concerned about a pattern he’d noticed since we were in college: a pattern of me pushing myself past my limits, not giving myself adequate time to rest, ignoring or perhaps not seeing warning signs until I had already crashed. “Going back to Vermont—or anywhere—without dealing with these issues would be a mistake,” he cautioned.
That was enough of a wake up call for me to really think about they way I treated myself. For so long, I’d fought my body when it couldn’t do what I wanted it to do. I got angry and frustrated when I wanted to ski or climb a flight of stairs or sit up for a meal but couldn’t. I berated myself for not getting better fast enough. My mind and body were forever battling each other. If I intended to win the war, I had to stop that pattern.
Two members of my medical team introduced me to the concept of cognitive behavioral therapy: recognizing patterns and behaviors that were causing myself harm, and training or retraining myself to act differently in those situations. For example, to help combat my insomnia, my sleep doctor recommended that I start going to bed at exactly the same time each night; that I use my bed only for sleep, so my brain would not associate it with activities like reading or watching TV; that I spend the hour before bed away from screens, listening to quiet music and doing deep breathing exercises to help myself relax. I could not control the neurological firestorm that Lyme was causing in my brain, but I could reinforce with good behavior the medications and treatments that were targeting that physical problem.
The same theory applied for the way I scheduled my day, the way I handled stress, and the way I set limits and boundaries for myself. It wasn’t easy. There were setbacks and slip-ups. It took a great deal of discipline to politely excuse myself for a nap at the same time each afternoon; to set time limits for talking on the phone; to walk away from my favorite TV show because it was making my neurological symptoms flare. I didn’t want to do any of those things, but I started to understand that I had to do them if I wanted to get well.
Over time, the new habits I created became routine. Taking proper care of myself became my top priority, and giving my health that significance made it easy to keep up the practice. Soon my body and brain were not arguing, but working as a team to get well. I started to get better much faster once my body realized that I was going to care for it properly, that I was in this fight with it, not against it.
We Lymies can’t control the spirochetes, but we can control ourselves. We can control the decisions we make and the habits we create that can help move us towards health. We can’t resolve to get well in the new year, but we can promise to take the best care of ourselves possible, to help achieve that end goal of restored health.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
Last year at this time, I wrote a post about New Year’s being a sort of mockery for patients with chronic illness: each day of suffering is much like the one before, and we cannot simply resolve to get well with the change of the calendar, the way we can resolve to lose weight or drink less coffee. So much of our convalescence is arbitrary.
For Lymies especially, we often can’t say how our energy will be one day to the next; even taking all of our medication correctly can make us feel worse before better. Spirochetes, like cancer cells, can replicate and burrow deep within our bodies and brains, despite our best efforts to fight them. Despite our will to stop them. One of the most frustrating aspects of living with chronic illness is not being able to control what is happening to your own body.
When I first got sick, I vacillated between the classic fight or flight responses to my situation. At first I thought I could ward off reality with a “mind-over-matter” mentality. I insisted on working at summer camp despite the fact that I had a serious case of mono; I drove back to Colorado after camp, willing myself to be well enough to ski that season; years later, after long-term treatment for tick-borne diseases, I moved to Vermont as soon as I got my PICC line out, sure that my determination would be enough to see me through any hiccups I encountered.
Each of these decisions landed me back in bed, sicker than before. Resolve and will and determination and a positive attitude were not enough to combat an aggressive physical infection.
Other times, when frustration got the best of me, I’d throw up my hands and think, what does it matter anyway? Why not stay up so late that I become too agitated to sleep, read and write so much that my neurological symptoms flare with electric intensity, skip my nap to have a bleary-eyed visit with a friend? I remember telling one friend, “Sometimes I feel like my life is a movie. What will happen next?” I figured that even if I didn’t take care of myself, even if I pushed myself beyond my limits, eventually it would have to work out, right?
Wrong. There was no script calling for someone or something to swoop in and save me. My life was not scheduled to get better in a neat little 120-minute package. I was the one writing the script. It was up to me to decide if eventually things would work out.
Of course, there were parts of my illness that I could not control; there were the actual bacterial and parasitic infections that could only be treated with intense antibiotic, anti-malarial and adjunct therapies.
But there was another part that was up to me. After my serious relapse in 2007—following the failed move to Vermont—a friend told me that he was concerned about a pattern he’d noticed since we were in college: a pattern of me pushing myself past my limits, not giving myself adequate time to rest, ignoring or perhaps not seeing warning signs until I had already crashed. “Going back to Vermont—or anywhere—without dealing with these issues would be a mistake,” he cautioned.
That was enough of a wake up call for me to really think about they way I treated myself. For so long, I’d fought my body when it couldn’t do what I wanted it to do. I got angry and frustrated when I wanted to ski or climb a flight of stairs or sit up for a meal but couldn’t. I berated myself for not getting better fast enough. My mind and body were forever battling each other. If I intended to win the war, I had to stop that pattern.
Two members of my medical team introduced me to the concept of cognitive behavioral therapy: recognizing patterns and behaviors that were causing myself harm, and training or retraining myself to act differently in those situations. For example, to help combat my insomnia, my sleep doctor recommended that I start going to bed at exactly the same time each night; that I use my bed only for sleep, so my brain would not associate it with activities like reading or watching TV; that I spend the hour before bed away from screens, listening to quiet music and doing deep breathing exercises to help myself relax. I could not control the neurological firestorm that Lyme was causing in my brain, but I could reinforce with good behavior the medications and treatments that were targeting that physical problem.
The same theory applied for the way I scheduled my day, the way I handled stress, and the way I set limits and boundaries for myself. It wasn’t easy. There were setbacks and slip-ups. It took a great deal of discipline to politely excuse myself for a nap at the same time each afternoon; to set time limits for talking on the phone; to walk away from my favorite TV show because it was making my neurological symptoms flare. I didn’t want to do any of those things, but I started to understand that I had to do them if I wanted to get well.
Over time, the new habits I created became routine. Taking proper care of myself became my top priority, and giving my health that significance made it easy to keep up the practice. Soon my body and brain were not arguing, but working as a team to get well. I started to get better much faster once my body realized that I was going to care for it properly, that I was in this fight with it, not against it.
We Lymies can’t control the spirochetes, but we can control ourselves. We can control the decisions we make and the habits we create that can help move us towards health. We can’t resolve to get well in the new year, but we can promise to take the best care of ourselves possible, to help achieve that end goal of restored health.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
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